Jammers made a difference through candy sales
When the Deerfield’s South Park Jammers were looking for a cause that would benefit from their annual charitable event, they decided on The Rory David Deutsch Foundation. In November, the young team members blitzed Deerfield’s Lake-Cook & Waukegan Road intersection selling custom-wrapped Hershey’s chocolate bars for $2 each. The kids, who mostly attended South Park elementary school in Deerfield, sold all 500 candy bars in three to four hours and brought in $1,000 for the Rory David Deutsch Foundation to benefit pediatric brain tumor research.
Tribute to Rory raised half a million
More than 1,650 people, including 835 children, “Soared to the Stars for Rory” at Adler Planetarium in April. This amazing event raised nearly $600,000 for pediatric brain tumor research and was considered the most successful first-time charitable event ever held in Chicago. Thanks to the tireless work of resourceful volunteers, this tribute to Rory featured extravagant raffle prizes that included a 1999 Lexus RX 300 and getaway weekends in New York. In serving as an Honorary Chair of the event, President Bill Clinton offered a videotaped message, in which he described Rory as a courageous and inspiring young man, that touched all of those assembled. The Silent Auction portion of the evening, which raised $47,820, was highlighted by the auctioning off of a tour of the White House with President Clinton.
Lemonade sales offered early support
Touched by Rory’s story, the owners of Fitigues launched a Lemonade selling campaign at its thirty stores across the country. Hundreds of children volunteered to sell glasses of lemonade for $1 every weekend in front of the stores. With a Memorial Day kickoff, more than 28,000 glasses were sold and proceeds were donated to The Rory David Deutsch Foundation for pediatric brain tumor research. Brooke Shields made a donation at the Santa Monica, California, store and a customer at another store made a $1,500 donation after saying he had lost a family member to a brain tumor.
Kids helped foundation take first steps
In 1998 and 1999, the Indian Trail Parent/Teacher Organization organized a Kids Who Care walk in June that raised about $5,000 for The Rory David Deutsch Foundation. As a tribute to Rory’s love of the solar system, the walk involved eight activity stations named for the planets. More than 150 kids sought sponsors for their participation in the inspiring event.
Rory Award made its mark
The first two recipients of the Rory Award for good citizenship were honored on June 18th at Indian Trail Elementary School in Highland Park. A tribute to Rory that recognizes students whose writing or artwork best reflects the caring and generosity he exhibited in life, the award went to kindergartner Diana Schalk and third-grader Jake Schneider. Both of these students are now in college and the Rory Award continues to inspire students at the school each year.
Charita-Ball brought causes together with remarkable success
Raising $650,000 for cancer research and drawing more than 2,000 people to the Navy Pier Ballroom on September 18th, this partnership event featured casino games, delicious food, and incredible raffle prizes. One-third of Charita-Ball’s proceeds supported The Rory David Deutsch Brain Tumor Research Program at Children’s Memorial Hospital, while another part of the funds went to assist general research in pediatric cancer.
Hoops helped bring hope
For three days beginning October 15, nearly seventy fourth graders competed in the 1st Annual Rory Deutsch Basketball Tournament and raised more than $850 for pediatric brain tumor research. Highland Park resident Rick Siegel, CEO of the Denver-based Apollo Group computer consulting firm, put together the fall tournament with the help of Vern Reich, who heads up the Small Fry basketball program in Highwood, Illinois. Named in Rory’s memory, the tournament sought fourth grade students from all around the Chicago area to participate. Some special features of the event included a three-point shooting contest for fathers and sons, and the professional announcing skills of sports radio personality Mike North. The tournament is another event that continues to support The Foundation.
Olga’s Day Spa stepped up for Rory
While Olga Nisenboim had never met Rory or his parents, she decided there was something she could do to help battle the disease. The owner of Olga’s Day Spa in Highland Park held a one-day fund-raiser at her spa that brought in $4,100 for pediatric brain tumor research. For five hours on October 17, Olga donated 100 percent of the salon’s revenues to The Foundation. In addition to raising $2,000 from all the spa’s beauty services, Olga held a day-long silent auction that brought in another $2,000. This was just the first of many such events Olga has hosted as a way to support further cancer research.
Beanie Babies set a trend of giving
When the Beanie Babies were all the rage, a unique shop dedicated to quality gifts and accessories turned the frenzy into a fundraiser for pediatric cancer research. The Karyn Collection in Highland Park set aside $2 from each sale of a Beanie Baby, a Buddy, a Pillow Pal or Attic Treasure, which resulted in a $12,000 donation to The Foundation’s funding of research efforts. In the years since, The Karyn Collection has continued to generate unique fund raising events for the cause.
The Children’s Ball boosted research and resolve
With an “Oz” theme that honored the 100th anniversary of the classic “The Wonderful Wizard of Oz” book written in Chicago by L. Frank Baum, the 41st annual Children’s Ball was held on December 11 and raised $1.6 million mainly for brain tumor research at Children’s Memorial Medical Center. The Rory David Deutsch Brain Tumor Research Program at Children’s benefited from the event as proceeds included funding to purchase the cutting-edge Photon Radiosurgery System (known as “the wand”) as well as proceeds to help the medical center’s overall brain tumor research programs through the Children’s Memorial Institute for Education and Research. Frank Baum’s great-grandson as well as many other celebrities, politicians and actors, attended the magical black-tie event at the Sheraton Hotel and Towers.
Art for Rory’s sake made an impression
The SoGO Art Exhibit, held April 29 at [email protected] in Chicago, showcased the works of ten emerging artists from Chicago and beyond. The exhibit brought together carefully selected works from artists ranging in their scope and exposure, and the event supported developing artists as well as the Rory David Deutsch Foundation, to which $4,000 of the evening’s proceeds were donated.
Rory Award continued to express citizenship
Two students at Indian Trail Elementary School in Highland Park received the Rory Award for good citizenship. Morgan Doetsch took top honors among kindergartners and first graders for her thoughtful illustration and Matthew Berk, who was a classmate of Rory’s, won the competition among second and third graders for his bright essay.
Cubby Bear Celebrity Golf Weekend recorded a big win
Nearly thirty celebrities from the worlds of sports and entertainment came together in the summer to raise more than $33,000 for pediatric cancer research. The Celebrity Golf Weekend was a memorable and successful fundraiser that spanned three days and included more than golf. At a kick-off concert at the Cubby Bear North, nearly 1,000 participants took in a performance by legendary piano player Leon Russell. Many of them gathered the following day on rooftops across from Wrigley Field for a family barbeque and a great view of the ballgame.
Indian Trail dedicated a space to Rory
As a first grader at Indian Elementary Trail School, Rory was passionately interested in science and space books. In honoring his memory, the school arranged a special space in its library that is now known as “Rory’s Reading Room.” Decorated with an outer space theme by Gabrielle Rousso, whose daughter attended the school, the room is still a favorite place for students to read and share books.
Karyn Collection increased generosity
Over two years, The Karyn Collection donated a portion of its sales of Beanie Babies and other children’s toys to The Foundation. The result: an additional $15,000 applied directly to understanding and treating pediatric brain-stem gliomas. The Highland Park specialty gift shop owned by Karyn and Marc Levy continued its fundraising efforts in 2001 through the sales of its special family blanket. For each blanket sold, $25 was contributed to The Foundation.
Scoozi showed support by celebrating tomatoes
Scoozi’s 11th Annual Tomato Festival, held August 22-26, benefited The Foundation and delivered a great time for kids and adults alike. The festival featured a tomato stomping contest, pizza-making party, a tomato cooking class and much more.
Whole Foods cooked up a day for Rory
For one day each quarter, every Whole Foods store donates 5% of its sales to a charitable cause in its community. On August 31, the supermarket chain’s Deerfield store chose The Rory David Deutsch Foundation to be the recipient of the program’s proceeds. The Deerfield store also launched a bimonthly “Rory Day” children’s activity program in October, which included fun ideas such as a pumpkin-decorating contest.
Olga’s Spa shared the beauty of its commitment
Olga’s Day Spa held its annual fundraiser for the Rory David Deutsch Foundation on September 10, which raised $4,800 for research dedicated to pediatric brain-stem gliomas. One hundred percent of the salon’s earnings that day were donated to the Foundation. Many members of Olga’s staff donated their time for the day as well. A silent auction and raffle raised additional funds.
More players suited up to shoot for Rory
The 2000 Hoops for Rory basketball tournament, held on September 22-24 in Highland Park, brought together more than 100 young players and raised $5,500 for The Foundation. Attendance surpassed that of the 1999 event, as four teams of fifth graders and six teams of eighth graders vied for all-star status. Rick Siegel and Verne Reich, launched the annual fundraising competition in 1999. This year included basketball clinics led by former UNLV coach Bill Bayno, Chicago Bull Jake Voskuhl, and two NBA referees.
Theatre Company made an encore of support
Throughout 1999 and in 2000, the child performers of the Lake Forest Children’s Theatre Company staged performances around the Chicago area and donated a portion of ticket sales to The Rory David Deutsch Foundation. While having a chance to develop performing skills, the kids who take classes with the Children’s Theatre also learned first-hand what it’s like to give a little something back to their community.
More Than 1,200 Shot to the Stars at the 2000 Family Event
The seeds of the Rory David Deutsch Foundation’s 2000 Family Event, “Shoot to the Stars for Rory” were planted the day that Ross met with the managers of the Windy City Fieldhouse and toured the 3,000-person capacity Chicago facility equipped with basketball and volleyball courts, a soccer field and ample open space. His view that it was the perfect setting for a family-oriented, recreational event geared to both children and adults proved impeccably true when the November event drew more 1,200 people and raised nearly $600,000 for The Foundation. Generous sponsors that underwrote a large portion of the evening’s expenses allowed the bulk of proceeds to go directly to support research into pediatric brain-stem gliomas.
As he did in 1999, President Clinton graciously agreed to serve as honorary chairperson of “Shoot to the Stars for Rory”. His videotaped message described Rory as a boy who was “always looking onward and upward, truly shooting for the stars” and The Foundation as an organization providing “invaluable support in the fight against this pernicious disease.” As the recreational theme of the evening captured Rory’s love of fun and play, many of the event’s guests were children who were provided with a carnival of activities. There was basketball and floor hockey, limbo and hoola-hoop contests, balloon artists and even a twenty-five-foot slide. The adults enjoyed an exciting raffle that featured two fancy cars and a Harley Davidson motorcycle and a live auction whose items ranged from an eight-week-old Labrador retriever to a round-trip private jet excursion anywhere in the U.S. A delicious Italian dinner, catered and largely donated by Jim Lazar of Marcello’s Catering, satisfied everyone’s appetite. The non-stop activity, camaraderie and goodwill of the evening symbolized a tribute to Rory’s life.
Jamba Juice served up a cool idea
When Jamba Juice of Highland Park celebrated its grand opening the store also introduced its Rory Galaxy Smoothie. For a full year, 50 cents of every Rory Smoothie sold went to The Foundation. Now that’s a powerful drink.
Saks shared a shopping spree
In May, just in time for Mother’s Day, Saks Fifth Avenue in Highland Park hosted a Private Shopping Evening benefiting pediatric brain cancer research. Serving cocktails and hors d’oeuvres as guests mingled and shopped, the store donated 10 percent of its sales that evening to The Foundation.
Rory Award honored great expressions
The Rory Award carried on at Indian Trail Elementary School and served to reinforce the school’s ongoing CARE (Caring and Accepting in a Responsible Environment) program and its objective of helping every child feel valued and respected. Kindergartner Madeline Barsky earned honors for her highly creative drawing and the essay award went to Hannah Kreindler, grade four, for her outstanding work on the duties of good citizenship. Barry Bakal, who initiated the award idea, continued to donate to The Foundation in the name of each Rory Award winner.
Young actors continued to shine for Rory
The Lake Forest Children’s Theatre Company continued its support of The Rory David Deutsch Foundation through its seasonal performances around the area. Led by founder Margo Proeh, the company drew more than 300 children excited to display their talent in shows that included “Peter Pan” and “The Music Man.” Donating a percentage of ticket sales from every show to The Foundation, this remarkable cast has made a dramatic impact in the battle against pediatric brain cancer.
Super Bears reunited to drive for the green
An impressive huddle of players from the ’85 Super Bowl Champion Bears, along with other well-known sports figures, participated in a unique golf fundraiser that supported two very worthy causes. The Bears Reunion Charity Golf Classic, held in June at Big Run Golf Club in Lockport, benefited The Otis Wilson Foundation and The Rory David Deutsch Foundation. Funds were raised primarily through sponsorship opportunities that included a closest to the pin contest — won by the Punky QB — and raffle and silent auction contributions that totaled a remarkable $200,000. At this event, everyone was a champion.
Kids generated creative sales
On four different dates throughout the year, Whole Foods of Deerfield invited kids to create crafts and bake desserts that were sold to the public. With proceeds going to The Foundation, their creations were a big hit.
Hoops event netted another big win
Switching from team play to 3-on-3 tournament and contests such as a three-point shootout and free throw competition, the basketball event that benefits The Foundation scored $32,494 for pediatric brain tumor research in September. Held at Highland Park High School, tournament director Alan Samsky expanded the format to get more kids involved and get adults in on the act as well. Former Chicago Bull Ron Harper was an added highlight, inviting special contributors to go one-on-one.
Olga’s generosity went more than skin deep
For the third straight year, Olga’s Spa in Highland Park coordinated an event in which 100% of the spa’s revenues for the day were donated to The Foundation. Held October 31st, this fundraising makeover brought in $7,561, nearly doubling its results of the previous year. Thanks to Olga’s heartfelt hard work, this event went beyond spa treatments with a delicious food buffet, a silent auction, and raffle.
California entrepreneur designed a collaborative effort
Like Rory, Erica Corrigon lost her life to a brain stem glioma. A friend of Erica’s family, Laurie Snyder, responded by using her skills as a clothing manufacture in Santa Monica to design a new print for her clothing line, Flap Happy. After learning of Rory, Laurie made a $2,500 donation to The Foundation and chose to donate a percentage of each sale from this line to The Foundation in memory of Erica. The line celebrates Erica’s love of puppies and is featured on T-shirts, shorts, swimwear, headwear, and dresses
The Foundation made an impact with two million dollar commitment to Duke
The Rory David Deutsch Brain Tumor Research Program at the Brain Tumor Center of Duke University was launched in the spring on 2000 to support laboratory and clinical studies in the area of pediatric brain tumors. With the help of funds from the Rory David Deutsch Foundation, the program conducted clinical trials of new chemotherapy treatments that have been found to treat pediatric gliomas in lab studies. In addition, the world-renowned cancer center conducted laboratory research to identify specific genes that may play a role in tumor growth. The Duke team was also in the process of developing vaccines for childhood gliomas. In an effort to provide an even deeper investment in the program at the Duke Brain Tumor Center, and enable the center to explore new approaches against childhood gliomas,
The Foundation made a research grant in the amount of $2,000,000 to be paid over ten years.
The promising developments at Duke included research on two combination chemotherapies – one of Temodar (temozolomide) and CPT11 and another of BCNU and CPT11. These chemotherapies were tested on children with brain-stem gliomas in clinical trials that evolved directly from lab studies conducted at Duke. Those studies showed that the combination of these agents were particularly synergistic. Temodar is designed to prevent the replication of rapidly dividing cells, such as those in tumors. It is the first chemotherapy for this type of recurrent glioma to come to market in 20 years.
Temodar is a methylating agent that puts a methyl group on a specific part of DNA, which ultimately leads to cell death. CPT11 has been found in lab studies to enhance the activity of both Temodar and BCNU. CPT11 is an inhibitor of topoisomerase, an enzyme that is critical for DNA replication, and is a derivative of camptothecin, a natural substance found in a tree native to China. BCNU is an alkylating agent that directly attacks DNA by putting a cross link between the two strands, resulting in cell death. Karenitecin was another new chemotherapeutic drug being tested at Duke, in collaboration with Texas Baylor Hospital. Like CPT11, it is camptothecin-based. Karenitecin has been observed to have strong antitumor activity at low concentrations and is designed to have less toxicity and drug resistance than other camptothecins. Unlike typical water-soluble camptothecins, Karenitecin is fat soluble, which scientists believe may give it enhanced power to penetrate tissue. These studies represent a portion of the substantial research and clinical trials on brain tumors that continue to take place at Duke. Duke was also in the midst of identifying a vast number of the genes found in a given type of brain tumor. Researchers were looking to see what genes are present in gliomas that are not found in healthy brain cells. If a gene is unique to a brain tumor, it is being targeted for diagnostic purposes and the development of treatment therapies. Over the years many growth factor molecules for specific cells in the body’s immune system have been identified. Methods for growing antigen-presenting cells (an antigen is a substance that produces an immune response), called dendritic cells, have been developed. As a result of this progress, many vaccine trials for different types of cancer were undertaken. For example, Duke researchers were able to culture and expand dendritic cells from brain tumor patients. These dendritic cells were being exposed in test tubes in the laboratory to a large number of gene products from childhood gliomas. These cells are then analyzed for their ability to activate immune cells. Once dendritic cells have been pulsed with specific tumor-related gene products from childhood gliomas and have been shown to activate immune cells, these pulsed dendritic cells can be reintroduced into patients with brain tumors. These clinical trials were designed to allow determination of the safety and effectiveness of these vaccines. Vaccine and immune approaches are particularly promising, since they carry much less toxicity to the normal brain than existing treatments of chemotherapy and radiation therapy. ”Because of the Foundation’s support and general advances taking place in cancer biology, I feel confident that within my lifetime effective treatment of childhood gliomas will become a reality,” said Dr. Darell Bigner, leader of the Neuro-Oncology Program and deputy director of the Duke Comprehensive Cancer Center. Dr. Henry Friedman, co-director of the Clinical Neuro-Oncology Program at the Brain Tumor Center, concurred. “With the help of the Foundation,” he said, “we can accelerate our progress and move closer to successfully treating and ultimately finding a cure for this disease.”
Campus Colors teamed up for Rory
Campus Colors, the nation’s largest retailer of collegiate licensed clothing and accessories in the country, joined the race for a cure by launching an annual fundraising event at its Highland Park store. Owners Barbara and Neil Rubenstein came up with the idea to reward any purchase or donation of $50 or more with entry into a “March Madness” raffle. The prize: an authentic #23 North Carolina basketball jersey signed by Michael Jordan himself. Proceeds generated from the raffle went to The Foundation’s support of further research into pediatric brain tumors.
Vivo sprung into action
The popular Chicago restaurant Vivo included The Foundation in its First Annual Spring Forward Bash in May by donating proceeds of an event that brought people together to enjoy delicious hor d’oeuvres, tasty drink specials, cool music, and an exciting raffle.
Jamba Juice raised a glass for Rory
As one of the smoothest operations around, Jamba Juice in Highland Park continued blending generosity with its taste for success. Raising $1,400 for The Rory David Deutsch Foundation in 2001 through a special drink known as the Rory Galaxy Smoothie, in 2002 the shop carried on its commitment to donate 50 cents of each purchase of this delicious concoction.
A true artist created a unique opportunity
Celebrated Chicago artist Tony Fitzpatrick created an etching that uniquely expresses childhood, and then donated the work to The Rory David Deutsch Foundation. Through his distinct talent and generosity, Fitzpatrick created an artful and heart-full fundraising endeavor.
The Karyn Collection brought in new gifts
The Karyn Collection in Highland Park continued to offer a portion of its sales of Beanie Babies and other popular store items to The Foundation. Having generated $1,265 for the cause in 2001, the specialty gift shop turned its attention to 2002 in anticipation of again exceeding expectations.
Steve Kessler put music to work for a cure
CD City, an independent music store in Highland Park, contributed money and promoted fundraising events for The Foundation. Owner Steve Kessler, a musician himself, performed at the Apple Tree Theater in March. All proceeds from the show’s $25 ticket price were donated to The Foundation.
Saks renewed its shopping special
Once again, Saks Fifth Avenue in Highland Park hosted a spring shopping spree event in which 10 percent of collected revenue was donated to The Foundation. Through the store’s 2001 event, more than $5,000 was raised to help promote the understanding and treatment of brain stem gliomas.
Family Event headed to the farm
The Rory David Deutsch Foundation Family Event, organized by co-chairs Robin Baba and Beth Conen, invited guests on a trip to the country with a family-style gathering at Goebbert’s Pumpkin Farm in Hampshire, Illinois. Called “Under the Stars for Rory,” as many as 1,000 people embarked on this adventure. Highlights included a corn maze, pig races, a petting zoo, dancing, a hayride to the pumpkin patch, plus hip sounds played by a D.J., an amazing silent auction, and a fabulous dinner catered by Marcello’s in Chicago.
Coach K guided a remarkable evening
The Hall of Fame leader of the Duke University basketball team, Mike Krzyzewski, won the attention and hearts of those who attended “An Evening With Coach K.” Raising approximately $230,000 for pediatric brain tumor research, the inspirational event, like the legendary coach, was one of a kind. Ross captured it best when he said, “Coach K gave multiple gifts to all of us that night. He not only helped us fulfill a fundraising goal; his words and ideas filled our minds and hearts. He talked about his teams over the years and how our Rory team can continue on its own championship quest to go the distance against pediatric brain tumors and other devastating childhood diseases. ‘Our victory,’ he said, ‘will be defined by the energy we bring to that quest, our commitment and the extent of our participation.’ What a message, what a show of support!”
Highland Park Charity Drive made a difference
Each year, the Highland Park Charity Drive proves you can give and also receive. During this major school event, which lasts more than a month, students select one charity for the focus of many diverse fundraising activities. The Rory David Deutsch Foundation was fortunate to be selected for the 2003 charity drive. Students organize various fundraising activities that take place before, during, and after school. Parents, faculty, local businesses, and others from the community get involved as well. A multitude of time, effort, energy went into this incredible event. Generating $88,000 to help fund research focused on pediatric brain tumors, it was one of the school’s most successful ever.
“Rory’s Star” benefited continued research
Chicago artist Tony Fitzpatrick, whose collections have appeared at The Art Institute, Museum of Modern Art in New York, and The National Museum of American Art, just to name a few, created a stunning etching called “Rory’s Star.” The etching was used to create a limited edition of only forty lithographs, which were donated to The Foundation to sell at $800 each and direct proceeds to tis ongoing support of pediatric cancer research.
Rory Award named new winners
Submitting expressions of good citizenship for consideration of The Rory Award, students at Indian Trail Elementary School put forward a terrific effort. Reinforcing the school’s ongoing CARE program, which ensures that every child feels valued and respected, The Rory Award went to second-grader Josh Hoffman for his superb drawing and fifth-grader Emily Goodman for her inspiring essay. As always, all of those who participated are true winners.
Children’s Memorial made meaningful progress
Generous donations made to The Foundation continued to support research and treatment work at Children’s Memorial Hospital. Under the direction of Dr. Stewart Goldman, Medical Director of Neuro Oncology, the dedicated research team at Children’s treated children with brain stem gliomas using a novel regimen that combines the drug Thalidomide with standard radiation and carboplatin chemotherapy in an effort to kill cancer cells and increase glioma survival rates. An initial data report included news that one child undergoing this treatment showed no signs of cancer progression more than two years after being diagnosed. “This is very hopeful especially when you consider the fact that 96% of children with brain stem gliomas lose their lives within two years of diagnosis,” said Dr. Goldman. “To be progression free at this point is very, very rare. We remain cautious in our optimism, however.”
In addition to this treatment, Dr. Goldman continued to focus on other innovative and promising areas of research. He expressed excitement over a new technique his team was investigating called, “Convexion Enhanced Chemotherapy. “We have taken brain tumor cells and have been able to grow them in the laboratory,” Dr. Goldman explained. “Once this is accomplished, it allows us to use the Convexion technique to infuse chemotherapy directly into the tumor. The advantage here is that we are attacking the tumor directly with small amounts of chemotherapy while avoiding toxicity to the whole body. This could represent a new therapeutic option for our young patients with regard to treatment and quality of life,” he continued. “We are excited about the possibilities here. We need to work further on enhancing techniques and we need specialized expertise. We are hoping to be able to add a physician scientist to the team in the near future to work with us in the lab on refining Convexion methodology.”
Duke reported achievements and optimism
As it has every year, the Brain Tumor Center of Duke University explained in a letter how the funds The Rory David Deutsch Foundation has contributed are being used to find causes and cures for pediatric brain tumors. In the letter, Dr. Bigner, M.D., Ph.D., the Edwin L. Jones Jr. and Lucille Finch Jones Cancer Research Professor at the Center, “We are in a major new era of rapid advances in brain tumor research. The ability to identify molecular targets with…genome technology is allowing us to identify new and previously unknown molecular therapeutic targets in malignant brain tumor cells.” The letter discussed other advances, including important work being done with a group of drugs called “small molecular inhibitors” and an epidemiology study that has been launched investigating some of the potential causes of childhood and adult brain tumors. The letter concluded by expressing great appreciation to The Foundation, which is certainly returned as we work together to move forward in this battle against childhood brain tumors.”
Campus Colors demonstrated its gifts
Campus Colors scored once again for Rory with two more successful fundraising events in 2003. First, the nation’s largest retailer of collegiate licensed clothing and accessories took to the court as an eager participant in the highly successful Highland Park High School Charity Drive. This was followed with a slam-dunk raffle staged before the start of the NCAA “March Madness” basketball tournament. Three Campus Colors locations, Highland Park, Hinsdale, and Naperville, took part, offering customers making a purchase of $50 or more a shot at a #23 North Carolina basketball jersey autographed by Michael Jordan. Raising $3,500, it was another brilliant game plan that benefited the work of The Foundation.
Olga’s Spa continued beauty of giving
Second to none for facials, manicures, pedicures, body wraps and other beautifying services, Olga’s Spa is also about nurturing the human spirit. Olga Nisenboim and staff continued their giving tradition by raising $8,600 for The Foundation. “We participated in the Highland Park Charity Drive, donating to The Foundation 10 percent of all product sales during one week in March, 2003,” Olga explained. “We also had our annual spa day, where the shop donates 100 percent of the revenues we generate to Rory’s Foundation.”
The Karyn Collection carried on its support
The Karyn Collection in Highland Park extended its generosity of donating a portion of its Beanie Baby sales to The Rory David Deutsch Foundation by turning to a popular new item in its line, the “Beanie Bopper,” and donating $1 from the sale of every one sold. Thanks to sales of Beanie Babies, Beanie Boppers and other items, The Karyn Collection donated in excess of $1,000 in 2002. Clearly, it’s the little things in life that count and add to the strength of The Foundation.
Proeh and her troupers drew more applause
The Lake Forest Children’s Theatre Company not only gives every child a chance to star, it helps other kids by supporting the fight against pediatric brain tumors. This year, the troupe performed “Bye Bye Birdie” in January and “Oliver” in May. As in previous years, the company donated a portion of show ticket sales to The Foundation. With the two performances in 2003, the curtain will rose on $2,400 in generous contributions. “What is equally important as how the kids perform,” said Margo Proeh, the enthusiastic theatre director, “is how much they gain by participating and helping out.”
Saks made giving fashionable
Saks Fifth Avenue in Highland Park again opened its doors to a private shopping event and fashion show for The Foundation. Staged in June, ten percent of all purchases were donated to help create brighter tomorrows for children with brain tumors. The percentage of the evening sales amounted to nearly $2,700.
Rory Day at JAB Produce delivered again
The day before the 4th of July weekend was a big one for JAB and The Rory David Deutsch Foundation. As in year’s past, the company donated its revenues from this day, which totaled $5,278.76 for The Foundation.
Kessler, CD City struck rhythm for hope
While Steve Kessler continued to promote the work of The Foundation and the story of Rory at his distinctive store, CD City in Highland Park, he also shared the success of his four-piece band. This year, Steve accepted contributions to The Foundation at his store and also at his live performances with the band. Thanks to Steve, the beat goes on for those suffering from a devastating disease.
3 on 3 hoops scored for Rory
With a theme of “3 on 3 For What Tomorrow Can Be,” Highland Park High School hosted this biennial competition on September 14, 2003. More than 200 young players participated in the day-long event that raised $35,000 for The Rory David Deutsch Foundation. Over 500 adults and family members came to cheer for their favorite players.
Peter Cetera offered evening of song and support
“An Evening with Peter Cetera” was an evening to remember for those who landed tickets to this rare performance by the singing star. It was also an evening for Rory, as proceeds of the October event at the Rosemont Theatre were donated to the work of The Foundation.
Eyeland of St. Johns sponsored Rory fundraiser
Nikki Earich, owner of Eyeland of St. Johns, became involved with the eyeglass business because her father was an optometrist and needed a high-end eyeglass supplier. Over the years, her business grew from one store to twelve stores. Each store identifies itself with, and works for, a particular charity. “When it came time for us to decide on our charity, it was an easy decision,” said Nikki. “The Rory David Deutsch Foundation.” Nikki decided to pursue her support in a big way. The fundraiser, “An Evening of Artwork and Eyewear,” held on February 19, was an open house that featured original artwork by Susie and Mitch Levin of High Voltage Studio, a Trunk Show featuring electrifying eyewear from Lafont, and refreshments. A portion of all sales from the evening was donated to The Foundation. The open house was so successful, that Nikki decided to extend the fund-raising period for another six weeks. Again, for that extended period, a portion of all sales went to The Rory David Deutsch Foundation. As a result, Eyeland of St. Johns graciously wrote The Foundation a check for $3,200.
Campus Colors continued its March Madness
For the fourth year in a row, Campus Colors ran a full court press for The Rory David Deutsch Foundation with its annual “March Madness” raffle. The prize is a legendary piece of basketball history: a North Carolina jersey autographed by number 23 himself, Michael Jordan. Anyone who made a purchase of $50 or more at any of the four Campus Color stores was automatically entered into the contest. Raffle tickets were also available for purchase to those who wanted to try their luck and make a contribution to The Foundation. “When the raffle is over, Ross always comes down to the store with the boys,” said Barbara Rubenstein, who owns and operates the Campus Colors stores with her husband Neil. “Rickey usually picks the winner, and then Robbie calls the lucky individual.” Geena Zaslavski purchased the winning ticket from the Highland Park Store this year. At the conclusion of the raffle, Barbara and Neil presented The Foundation with a check for $5,000.
With Rory wristbands that read “Brighter Tomorrows”, Barbara discovered another way to help The Foundation on a continual basis. “We put the bands on the front counter with a sign that read ‘available for a donation,’ and we decided not to take less than a dollar,” Barbara explained. “Well, people came in and made five, ten, and even twenty dollar donations. And, of course, all the kids want them. We were able to give The Foundation nearly $1,000 from these donations.”
Olga’s Spa hosted its beautifully giving event
For the sixth straight year the staff at Olga’s Spa in Highland Park contributed their time and energy to what Olga likes to call “Rory Day.” On that day, the proceeds from all of the shop’s products and services are donated to The Rory David Deutsch Foundation. The September event featured a delicious buffet, a raffle, and a silent auction. “The Highland Park community has always been generous in donating auction items,” Olga said. “That is where we make the most money for The Foundation. We love to have hard-to-find or hard-to-get items such as autographed sports memorabilia or game tickets.” In this year, Olga and her staff have raised almost $40,000 for pediatric brain tumor research.
Performance proceeds from “The Swinger” donated to Rory
The Swinger, a one-man show written and performed by Rob Shindler, a Chicago attorney, chronicled the journey he and his wife traveled down the road of infertility. While most discussions of infertility focused on the wife, the show featured the unique perspective of the husband’s dealings with this emotional issue. All proceeds from the October 5th performance of this enlightening show went to The Rory David Deutsch Foundation.
Fit for the Stars family event mixed fun and funds
The Centre Club in Gurnee, Illinois donated its entire staff, time, and 60,000 square feet of fun for the fourth Rory David Deutsch Foundation Family Event in November. With a variety of sports activities and games, a live and silent auction, and catered food from Marcello’s, the event delivered fun for the whole family and raised $340,000 for the battle against pediatric brain-stem gliomas.
Researcher identified importance of glioma protein
In a research laboratory at Northwestern University, Dr. Sandeep Batra made strong progress a protein called p-38. The lab is associated with Children’s Memorial Hospital has been partially funded through donations from The Rory David Deutsch Foundation. P-38 belongs to a family of proteins called mitogen-activated protein kinases. “These proteins actually help the brain stem glioma tumors to survive,” Dr. Batra said. “They are important in determining how the tumor will react to treatments such as radiation and chemotherapy. They have never been investigated in this capacity before.”
However, research has been conducted on p-38 in relation to other medical conditions including leukemia, and prostate cancer, and joint inflammation. Dr. Batra, a Pediatric Neuro-Oncologist who has been working on p-38 for about a year and a half under the direction of Dr. Stewart Goldman, expressed excitement about having access to this body of existing medical knowledge. “It will help us uncover the mystery surrounding this family of tumors,” he said. “We are already looking at a couple of medications that will work better if we can block the p-38 from protecting the tumor. We are hoping to develop some oral pills that will do that blocking and make treatment more effective. Our next logical step is to use either gene therapy or medications to block p-38 in a mouse with a glioma tumor to demonstrate that our research is effective. We greatly appreciate the kind of support we get from The Foundation. It is so critical in any kind of progress we make.”
Rory wristbands raced out of Running Right
Bill Moss is no stranger to The Rory David Deutsch Foundation. Through his Highland Park store, Running Right, he has been generous in donating silent auction items for The Foundation’s Family Events. This year his daughter gave him an opportunity to get more involved in the charity. “She was working on her Bat Mitzvah and was selling Rory winter hats and wristbands,” Bill explained. “I came home one day and saw the dining room table stacked with hats and bands and I realized we could sell them in the store.” The pull-on winter caps and the blue wristbands with The Foundation theme, “Brighter Tomorrows,” were very popular at The Foundation’s Family Event the previous year. Bill asked placed them in his store’s most ideal location, the front counter. The sales began in December of 2004 and continued until all the hats and wristbands were sold.
Karyn continued collecting for Rory
Karyn and Mark Levy entered their seventh year of support for The Rory David Deutsch Foundation. At The Karyn Collection in Highland Park, a portion of the sales from all TY products—which includes Beanie Babies and Beanie Boppers—continued to be donated to The Foundation. “The Deutsch family has been customers of mine since we opened the store,” Karyn said. “My daughter started working in the store when she was 14 and one of her first customers was Mindy, who was pregnant with Rory at the time. We have a very personal commitment and connection to the family, and I will always have a special place in my heart for the Deutsch family.”
Congress honored Rory and The Foundation
Initiated by Illinois congressman Rahm Emanuel, the U.S. House of Representatives honored Rory and The Rory David Deutsch Foundation on January 5, 2005. A portion of Emanuel’s statement to the House read: “I applaud the research supported by The Rory David Deutsch Foundation on behalf of children afflicted with brain tumors. The promise of a cure borne from this heart-breaking tragedy serves as a source of inspiration and hope for the future of our children. I join with the Fifth Congressional District and indeed all of Chicago in wishing The Foundation and the Deutsch family continued success and happiness in the future.”
Rory’s class dedicated graduation year
The eighth grade class at Elm Place Middle School, which Rory would have been a member of, added to their graduation year by organizing a number of successful fundraisers on behalf of The Foundation — including a Valentines Day dance that raised $2,500 for The Foundation and in May an auction featuring everything from restaurant gift certificates to celebrity and sports memorabilia. Through letters and e-mails to potential donors, they explained The Foundation’s mission and their fundraising goals. “They were all excited about being involved with this last big bash for Rory,” said eighth grade teacher John Whitehead. “To them, their eighth grade year was really about something.”
Children’s Theatre Company again raised the curtain for a cure
Margo Proeh and the budding young stars of the Lake Forest Children’s Theatre Company once again stepped into the spotlight for The Rory David Deutsch Foundation. In keeping with The Foundation’s commitment to actively involve children in its charity events, the Children’s Theatre stages performances each year and donates a portion of the proceeds to the battle against pediatric brain tumors. This year, Margo’s hard-working team presented the timeless classic “Aladdin.” Margo also broadened her professional activity and her commitment to The Foundation. In June of 2005, she staged the World Premiere of “Romes n’ Jewels,” a hip-hop ballet based on Romeo and Juliet at the Vittum Theater in Chicago. A portion of this show’s proceeds also benefited The Foundation. “This show was dedicated to a number of people,” she said, “and one of them was Rory.”
JAB Produce continued its annual Rory Day
JAB Produce sells fresh produce to grocers all over Chicagoland. On July 1, JAB Produce again sponsored its own “Rory Day.” On that day, five percent of all sales were donated to The Foundation. “I have known the Deutsch family a long time and, of course, I know about The Foundation,” said Steve Serck, who owns the company and is also a member of The Foundation’s Board of Directors. “I just decided that whatever I can do for The Foundation, I am going to do. We put up banners in the store and promote it heavily. My employees also engage in individual contributions that they donate to The Foundation.” With customers who typically buy produce by the truckload, this is always a big day for Rory.
More students shined for Rory Award
This was another terrific year for The Rory Award Program at Indian Trail School. Reinforcing the school’s CARE program, the Rory Award appreciates the written and artistic interpretations of students on the responsibilities of being a good citizen. In 2004, Jeremy Forman, a second grader, earned honors for his superb drawing depicting good citizenship. Madelaine Sereda, a fifth grader, wrote the winning essay. In 2005, first-grader Jordyn Cohen earned honors for her artistic expression of good citizenship and Marlee Learner, a fourth-grader, wrote the winning essay.
U of I fraternity delivered championship event
The Zeta Beta Tau Fraternity at the University of Illinois, Urbana/Champaign campus sponsored a Powder Puff football game that benefited The Foundation. The fraternity’s philanthropy chairman, Jeffrey Holmes, met Ross and his sons when serving as a counselor at Camp Horseshoe. “I’ve known about The Foundation and the work it has been doing for a while. The Power Puff game is our main philanthropic event of the year, and this year we did it for Rory.”
In this event, members of the fraternity coach a team from a participating sorority. “We get fifteen or sixteen sororities each year to participate, and they all pay a $100 entry fee,” Jeff said. “Guys in the house also make contributions. Then, we write to all the fraternity parents and ask them to make contributions.” This year, twelve sororities from the Champaign campus participated. The Championship Game took place on Saturday, April 9. The championship trophy was awarded at a post-game concert, where Jeff spent time on stage acquainting the crowd with the efforts and goals of The Rory David Deutsch Foundation. The event raised almost $3,000. The fraternity’s philanthropic commitment didn’t stop there. They have an ongoing program known as “Sober Drivers. On the weekend, anyone can call the house and rent a Sober Driver for $1. The fraternity kept track of the funds and at the end of each semester sent The Foundation a check.
3-on-3 hoops tournament won the day
Fresh jerseys, tightly tied sneakers, and baggy shorts matched the determined game faces of more than 160 fourth through tenth grade boys and girls who took to the floor for a day of 3-on-3 hoops—a tournament that has become a championship event supporting The Rory David Deutsch Foundation. Held on October 7, 2005 and hosted by Highland Park High School, the fifth year of this biennial basketball gathering raised $20,000 for The Foundation. This event brought out both the competitive and giving spirit of young players who typify the tournament’s theme, “3-on-3 for What Tomorrow Can Be.”
More than 300 fans cheered teams of boys and girls who were matched in 3-on-3 games against their peers. “It was another great year, and another great group of kids,” said Alan Samsky, who has served as the tournament’s director for the last four years. “It’s all about raising awareness, raising support for The Foundation, and having fun for a good cause.”
Campus Colors posted another slamdunk for Rory
Campus Colors again raised a championship banner for The Rory David Deutsch Foundation by raising support, awareness, and excitement through its annual “March Madness” raffle. It is simple; win the raffle and you win an authentic University of North Carolina basketball jersey autographed by, yes, the great Michael Jordan. The Foundation was the recipient of the $4,000 raffle tickets receipts. Keeping The Foundation in mind, Barbara Rubenstein also took advantage of the popularity of a promotional poster featuring country music star Kenny Chesney. The posters are part of the “Wear Your College Colors to Work Day,” which was held September 1st. “Instead of giving these posters away, we decided we would take a donation of $50 or $100 and pass that amount on to The Foundation,” Barbara said. “It’s just another way to raise money and awareness for a great organization.”
Zeta Beta Tau enjoyed victory for Rory
The Zeta Beta Tau Fraternity at the University of Illinois, Urbana/Champaign, once again sponsored a day of Powder Puff football. This tournament delivered pigskin excitement and also raised $2,700 for The Rory David Deutsch Foundation. This year’s tournament, held in April 1, featured 12 sorority teams while brothers of Zeta Beta Tau, Chapter Rho, served as coaches. The Foundation also benefited again this year from Zeta Beta Tau’s “Sober Drivers” program. In the spring, the program raised approximately $650 for The Rory David Deutsch Foundation.
Barry Bakal’s drive for the green raised $20,000
In mixing his love of golf with his loyal support in the battle against pediatric brain cancer, Barry Bakal posted a championship score in a one-day, one-player event that raised the phenomenal sum of $20,000 for The Rory David Deutsch Foundation. On a June day at Hillcrest Country Club, this tireless Rory supporter played 100 holes of golf to help generate funding for The Foundation, increase awareness of the disease and its affects, and galvanize continued interest in finding a cure. Backed by sponsors who donated dollars, by hole, or by score, Barry put his own money behind his game. He donated $20 for each double bogey or worse score on a hole, and $30 for every birdie he sunk. The largest donor to this clever and inherently grueling event received a free foursome at Hillcrest Country Club.
JAB Produce landed another big order
For the third year in a row, Steve Serck designated a percentage of the receipts from one of his company’s most profitable days to The Rory David Deutsch Foundation. JAB Produce sells fresh produce to grocers throughout the Chicago area. The weekend before July 4th is one of its busiest, and coincidentally, this is when the company holds its annual “Rory Day.” On this day five percent of all sales are donated to The Foundation. At JAB, big orders typically symbolize orders by the truckload. This year, those orders added up to a generous contribution of $6,000 to The Foundation.
Radiothon raised record amount for Children’s Memorial
On August 11th and 12th, Chicago radio station 101.9 FM, The Mix, took to the air for the Seventh Annual Eric & Kathy’s 36 Hour Radiothon benefiting Children’s Memorial Hospital. The Radiothon raised over $8 million for the hospital over the previous six years, and this year brought in a record $2 million in gifts in 36 hours. Broadcasting live from the Siragusa Lobby of Children’s Memorial, energetic morning personalities shared the moving stories of children, parents, doctors, nurses, and staff in an effort to raise funds for this life-saving institution. Among the show’s magical moments was the airing of a song paying tribute to Rory and the heroic ways in which he responded to adversity. The money raised from the event goes toward pediatric research, patient care, education, and advocacy. Thanks to the determined efforts of the staff at WTMX and the generous pledges of its listeners, the hospital continues to work toward medical advances that can make a difference in the lives of its young patients.
Barry Silver raced to the finish for Rory
For several years, Barry Silver trained for and completed the physically demanding challenge of a triathlon. The grueling combination of swimming, running, and biking in these events has helped keep the Northbrook-based attorney in shape, and his efforts have also contributed to the health of local charitable organizations. This year, his drive to compete raised $11,000 for The Rory David Deutsch Foundation. “Each year, I select a different organization to represent in a triathlon,” Barry explains. “The money that comes from those who sponsor me in the event goes to that organization.” It was Barry’s wife who helped him discover this year’s choice. She picked up a Rory David Deutsch Foundation brochure while shopping at the Campus Colors store in Highland Park. “My wife told me I had to read through it and, as I did, I knew I had found my next charity,” said Barry. “It had me in tears. After learning more on The Foundation’s website, I realized just how worthy this organization is, and just how important it is that cancer research be supported by continued funding.” The race took place September 9, 2006 in Lake Geneva, Wisconsin. “More than 200 people made contributions to my race for The Rory David Deutsch Foundation,” he said. “It was incredibly motivating.”
Seniors came together for Rory
The Brookdale Senior Living Group owns and operates Hawthorn Lakes and The Seasons at Glenview Place. Residents and family members gathered together on October 6th for an evening of elegance and hope that raised $2,500 for The Rory David Deutsch Foundation. “A Recipe for Hope,” as the evening was billed, took place at The Seasons. This tasteful occasion featured fine dining highlighted by the signature dishes of Brookdale Senior Living’s top Chicagoland chefs. This six-course culinary treat celebrated the warmth of family and the work of The Foundation.
Record crowd celebrated ‘Rockin’ Family Event
The sounds of children laughing, splashing, dancing, running, and rejoicing echoed throughout the Highland Park Recreation Center at The Rory David Deutsch Foundation Family Event in October. With the theme, “Rockin’ Under the Stars: A Family Exercise in Hope and Help,” this evening of food and fun, games and prizes, exercise and entertainment drew nearly 800 people and raised close to $400,000 for The Foundation. “Quite simply, it was an amazing event,” said Robin Baba, who once again partnered with Beth Conen as co-chair of the event. “This was one of our largest turnouts, and we couldn’t be more thrilled.” When they were not joining their children in fun-filled games and activities, parents were swept up in the excitement of the event’s raffle and live auction. Raffle prizes included a laptop computer, a Vespa, his and her Hermes watches, and, the Grand Prize, a 2006 Toyota Scion. At the end of this celebration, everyone gathered outside of the Highland Park Recreation Center for a spectacular fireworks show. It was the culmination of an event filled with stars…paying tribute to a bright star that continues to shine in their lives.
Foundation increased its support of Children’s, Duke
The Rory David Deutsch Foundation extended its support of research at both Children’s Memorial Hospital and Duke University. The Foundation had contributed $400,000 of a $1 million grant to innovative research projects being conducted at Children’s Memorial under the direction of Dr. Stewart Goldman. In this, The Foundation’s third of its five-year commitment, it increased its increments of payment to $200,000 per year. At the same time, The Foundation extended its $2 million grant to Duke University to be paid over an additional five years. With a pledge of $200,000 a year, The Foundation will contribute a total of $3 million toward ongoing brain tumor research being conducted at the Robert Tisch Brain Tumor Center at Duke University.
Dr. Friedman, Duke researchers encouraged by continued progress
World-renowned neuro-oncologist Dr. Henry Friedman and his staff of researchers at The Preston Robert Tisch Brain Tumor Center at Duke University reported considerable progress related to the treatment of pediatric brain tumors. “Because of the support of The Rory David Deutsch Foundation, we are able to lead ground-breaking studies into therapies that will help children with brain tumors,” Friedman said. One of the therapies being studied involves a drug that is already making an impact in cancer treatment. “We found that a particular drug regimen had a positive response for adults suffering from recurrent malignant gliomas and now, with the funding from The Foundation, we have extended the research to children,” explains Friedman. Researchers at Duke found that the targeted-therapy drug Avastin, which has already been proven to be effective in the treatment of metastatic colorectal cancer, combined with CPT11—a chemotherapy agent used to treat colorectal cancer—also works on adult brain tumors. In the last year Dr. Jeremy Rich of the Brain Tumor Center has found that, in the laboratory, this regimen should be effective in pediatric brain tumor cases as well.
Through the Pediatric Brain Tumor Consortium, Duke researchers opened a clinical trial to see how the drugs work on children. Unlike other drugs that need years of clinical trials and FDA approval, these two drugs have been studied extensively by doctors. The researchers’ eventual hope is that, rather than needing to approve entirely new drugs, the FDA will simply have to grant new uses for the drugs.
Children’s Memorial researcher optimistic about her work
Researchers are constantly looking at new ways to strengthen the fight against brain tumors in children. While definitive therapies in the field have yet to emerge, there are many areas of research that continue to show great signs of promise. At Children’s Memorial Hospital, Amy Rosenfeld’s research in the Pediatric Neuro-Oncology Department is one example of progress that continues to offer hope.
In the final year of a three-year fellowship at Children’s Memorial, Rosenfeld’s work zeroed in on one property of the drug Busulfan, which is already being used effectively in oral form to treat certain kinds of cancer. Busulfan has been used to treat brain tumors, but at doses that necessitate support until a bone marrow transplant. With this starting point, Rosenfeld tested an intravenous version of the medication treatment in lower doses to determine whether bone marrow damage can be avoided without reducing the drug’s positive affects. “By testing this new form of an existing drug, there may be a way to develop a new treatment specific to brain tumors,” said Rosenfeld, who plans to become a pediatric neuro-oncologist after completing her fellowship. Under the guidance of Dr. Stewart Goldman and partially funded by The Rory David Deutsch Foundation, Rosenfeld’s work has already cleared early testing hurdles and is being readied for a Phase I clinical trial. “We have completed background work on animals and proposed the Phase I trial, which involves testing the technique in humans,” said Rosenfeld. “This is something we’re very excited about.”
Rory Award winners showed their talent
Once again the students at Indian Trail School in Highland Park took a break from their schoolwork and put pen to paper, or brush to canvas, to express their feelings about the responsibilities of being a good citizen. It is the school’s “CARE” program that nurtures their giving spirit, and it is The Rory Award that encourages their creations. Since 1999, The Rory Award has complemented “CARE,” which provides students with support and activities that ensure that they feel valued and respected. Together, they continue to celebrate Rory’s memory. In 2006, fifth-grader Jori Horberg wrote the winning essay, and second-grader, Stella Gerson created the winning art piece.
Lake Forest Children’s Theatre Company earned another bow
The Lake Forest Children’s Theatre Company once again donated a portion of ticket sales from its many performances. With several different casts participating in a twelve-week program that develops their skills, each performs the program’s selected work on a stage in their area. The company’s fall musical, “Guys and Dolls Jr.,” included all the professionalism of a Broadway show, with students involved in everything from costumes to set lighting. In the spring, the company staged “High School Musical,” based on the film that became a favorite with kids and teens. For the effort they give and the support they offer year in and year out, The Lake Forest Children’s Theatre Company certainly deserves a standing ovation.
The Karyn Collection carried on its giving momentum
Through their Highland Park store, The Karyn Collection, Mark and Karyn Levy continued to contribute a portion of its sales on particular products to The Foundation. Featuring handcrafted toys, clothing, furniture, accessories for children, and some unique gifts for adults; the store is a favorite of area families. “We are always looking for new ways to promote and raise funds for The Foundation,” said Karyn. “Celebrating Rory’s memory to help children facing similar circumstances is a mission that will always have our commitment.”
‘Hot Dogs, Hamburgers, and Hope’ marks a milestone, nourishes a need
In 1977 Michael Hoffman turned a 900 square foot “hot dog stand” into a 6,500 square foot food emporium designed to serve up fun and excitement along with its great American menu of jumbo dogs, charbroiled burgers, and chicken and steak sandwiches. Today, Michael’s Chicago-Style Red Hots is a family favorite in Highland Park. The Foundation was honored that the restaurant chose to celebrate its thirtieth anniversary year with a family-style fundraising event supporting pediatric brain cancer research.
“Hot Dogs, Hamburgers, and Hope,” held December 7, 2007, was a delicious good time that drew 200 guests of all ages and raised an amazing $70,000 for The Foundation. Highlighted by hearty cuisine and lively conversation, the evening escalated into a full swing party with a knockout performance by the Beatles tribute band known as British Export. “The story of Rory and the work of The Rory David Deutsch Foundation is well known in the surrounding communities and beyond,” says Michael Hoffman. “In marking a significant anniversary for our business, we wanted to show our support for an organization that is making a significant difference in the lives of children. Many of our customers over the years have contributed in their own way to the mission of The Foundation, so this event was a way for us to applaud their commitment and to make our own contribution to this important cause.”
For the event, Hoffman donated the use of a restaurant that is known as a suburban melting pot of teenagers, businesspeople, families with young kids, and seniors. Its walls are covered with photos of former customers, along with restaurant reviews and awards. Its eclectic and expansive space has made it a popular setting for festive fundraisers, business receptions, and family gatherings. “We set out to establish a restaurant that feels like home but, with the opportunity to present live and DJ music, a place where people come to celebrate,” says Hoffman. “What could be more worthy of celebration than the ongoing support The Rory David Deutsch Foundation provides to expert researchers in the field of pediatric brain cancer. This disease affects all of us in some way, and we take great pride in being associated with this organization through this event and, as it continues to move forward, in other ways as well.”
My Generation draws shoppers with a giving style
At My Generation, it’s hip and fashionable to give back to the community. Catering to the fashion sense of young teen boys and girls, the Highland Park store hosted a special shopping week in June that benefited The Rory David Deutsch Foundation. When she purchased the store last year, Renee Liss had already incorporated a charitable commitment into her business plan. “I was focused on finding a way to support the community that the shop serves,” she says. The idea she settled on was making the best use of any excess clothing or gifts. “We sold these items over the course of the week, and ten percent of our sales went to The Foundation’s efforts to support pediatric brain stem glioma research. We plan to do this twice a year, with a different charity benefiting from each event.”
The Foundation was the recipient of the store’s first shopping event because Mindy Deutsch is a frequent customer of the shop. “In getting to know Mindy and learning of Rory and his courageous fight, this was the perfect organization to kick off our annual charitable drives,” says Renee. “Through various promotional efforts, our young customers and their parents were well aware of where the money from their purchases would go. There was great excitement and it was quite successful. We have already lined up other charities for future events, but continue to see ourselves as partners of The Foundation and its commitment to find a cure.”
Recognizing another round of Rory Award winners
While Barry Bakal’s more recent support of The Rory David Deutsch Foundation revolved around his golf swinging stamina, his involvement with The Foundation stretches back to its beginnings. He takes pride in having initiated and sponsoring an award that for ten years has recognized students whose artistic expression reflects the noble character and good citizenship Rory displayed in his short life.
The Rory Award complements the “CARE” program at Indian Trail School in Highland Park, which Rory attended. The “CARE” program nurtures a giving spirit by providing Indian Trail students with support and activities that ensure that they feel valued and respected. “Each year the school chooses a pillar of character to build a school theme around,” Barry explains. “Through the program, students submit essays or artistic drawings based on the theme and then two extraordinary submissions are selected, and those students receive The Rory Award.”
The two Rory Award winners in 2008 went to girls at Indian Trail. Fifth-grader Ali Fraerman took the honor for her written expression of good citizenship, and first grader Reece Elowe for her artistic work. “The Rory Award is a big deal at the school, and students always look forward to it,” says Barry. “Every age group is aware of the award and of Rory. It’s the same way in the surrounding community. When you mention Rory in the Highland Park area, everyone knows who you are talking about.”
This is particularly true at Indian Trail, where a special area in the school library honors Rory’s memory. Greeted by a sign that reads, “Rory’s Reading Room,” this intimate space is decorated, as Rory would have wanted, with a galaxy of stars, planets, and moons. “Students often read stories in this space, and I’m sure they think of ideas for their Rory Award project,” says Barry. “It’s hard to believe that the first Rory Award winners are now in college. That’s just another example of the impact Rory has had on the lives of so many.” Through The Rory Award and Rory’s Reading Room, there are sure to be many more that will be inspired by him as well.
Remembering Paulina with a race for a cure
Paulina Cooper died on September 21, 2004—the last day of summer. She was six years old. Paulina battled the same type of tumor as Rory. Although her family lives near Kansas City, Kansas, she also included Dr. Stewart Goldman of Children’s Memorial Hospital as one of her doctors. In her search for an organization that could benefit from an annual race established to honor her daughter’s memory, Ann Todd, Paulina’s mother, came upon The Rory David Deutsch Foundation website. She was struck by the similar paths of Rory and Paulina. “It was pretty amazing, and I wanted the proceeds of our event to go toward research of aggressive pediatric tumors,” Ann says. “The Foundation was a perfect fit.”
The 2nd Annual Paulina Cooper Dot-To-Dot 5K Run/Walk was held Saturday, August 23, in Kansas City. It drew runners and walkers of all ages who stepped up in the fight against cancer and in celebration of Paulina’s life. “We call it the ‘Dot-To-Dot’ race because of Paulina’s ability to connect with others and her reminder to us of the importance of staying connected in relationships with others and with God,” says Ann. The idea for the race came about through Ann’s conversations with her co-workers. “They all knew Paulina, and were touched by her strength and kindness,” she says. “Someone mentioned the idea of a race and it just evolved from there. We all came together and it took about eight months to organize the first race in 2007. With each step of planning, I’d be reminded of my little girl—her sweetness, gentleness, love of life, and that ability to reach out and connect. This race helps others get to know her and, hopefully, helps prevent the devastation of lives through its support of efforts to find a cure for childhood brain tumors.”
Paulina’s unique strength and character is perhaps best exemplified by a story that Ann shares in her own words below:
Paulina was in the last month of her life, when her body was failing. We had flown to California to visit my older sister in LA. After one long day of fun in the sun and swimming, Jimmy, Paulina’s four-year-old brother, comes into the bedroom where I was getting Paulina to bed. Jimmy says to me, ‘Mommy, I don’t want Paulina to die.’ Paulina was across the room in bed trying to sleep. I told Jimmy, ‘Paulina’s not going to die tonight. Let’s talk about it in the morning.’ Well, Paulina hears us talking, and despite having lost motor function on her right side, physically drags herself to where we are sitting. Jimmy looks at her and says, ‘Paulina, I don’t want you to die.’
I was so exhausted mentally and emotionally at the time. My mind was racing on what to say to be the support system for my children. Without any hesitation, Paulina, at six years old, takes that burden from me by saying, ‘Jimmy, I am going to try to stay alive for you as long as I can, but if the doctors can’t fix me then part of me is going to go to heaven and the other part of me will be in your heart forever.’ It was the most amazing moment in my life. To this day Jimmy terribly misses his sister and will sometimes break down. But, in the end, he always comes back to that conversation and will say, ‘You know Mommy, Paulina’s in my heart forever.’
Researchers at Children’s continue to make strides, share optimism
The mission of The Rory David Deutsch Foundation is to eradicate pediatric brain tumors and other devastating childhood diseases as well as to make a difference in the lives of afflicted children and their families. The Foundation’s determination in achieving this bold mission is perhaps best reflected in its enduring partnership with Children’s Memorial Hospital. Under the direction of Stewart Goldman, M.D., the Gus Foundation Chair of Neuro-Oncology; Medical Director, Neuro-Oncology; and Director of Clinical Trial Center at Children’s; researchers at Children’s have relied on funding from The Foundation to investigate new and promising methods to treat children battling brain stem gliomas. Having increased its increments of payment to $200,000 per year, The Foundation is now in the fourth of its five-year, $1,000,000 commitment to Children’s.
Combining The Foundation’s pledge with other avenues of support, the dedicated team of researchers at Children’s has pursued advancements in pediatric cancer treatment on multiple fronts. The team has tested a novel regimen that combines the drug Thalidomide with standard radiation and carboplatin chemotherapy in an effort to kill cancer cells and increase glioma survival rates. It has attempted to manipulate protein pathways in an effort to make even the most aggressive tumors more responsive to much less toxic therapies. In examining existing drug treatments, the team has tested an intravenous version of the drug Busulfan. In lower doses, this drug is already being used effectively in oral form to treat certain kinds of cancer, in lower doses to determine whether bone marrow damage can be avoided without reducing the drug’s positive affects.
These and many other steps forward, including the progress of a new interstitial program at Children’s, continue to fuel the objectives and optimism of these expert researchers. In its study of interstitial therapy, a fully trained nurse working in the lab is able to implant a luciferase gene—the gene that makes a firefly glow—into the tumor cells of an animal. With the use of a specialized machine, the cell in the animal is illuminated, allowing researchers to watch the tumor grow in real time. “This is a study we’re very excited about, and the equipment we rely on is made possible by The Rory David Deutsch Foundation,” says Dr. Goldman. “Rather than having to sacrifice the animal, we’re able to observe the tumor as it progresses. This can help us determine how and where to treat a progressing tumor in a child.”
As Dr. Goldman points out, however, significant progress in the fight against pediatric cancer ultimately depends on a collective approach that stretches well beyond the walls of one institution. With that philosophy in mind, Children’s Memorial proudly hosted the thirteenth International Symposium on Pediatric Neuro-Oncology (ISPNO), held June 29 to July 2. This meeting welcomes oncologists, neurosurgeons, radiation oncologists, neurologists, nurses, basic researchers, neuro-pathologists, neuro-radiologists, endocrinologists, psychologists, social workers, research associates, and other health care providers involved in the care of children with central nervous system tumors. “This gathering of physicians, surgeons, nurses and researchers from around the world provided a great opportunity for interaction and exchange of information, and it was a thrilling opportunity for Children’s Memorial to showcase the excellence of our neuro-oncology program,” said Dr. Goldman. “I firmly believe that it is only through collaborative efforts like this that we will some day find a cure for pediatric cancer. The experts who attended ISPNO represented a broad spectrum of specialties, and the gathering encouraged great discussion on current trends, treatment, management and care of children battling central nervous system tumors. I am energized and inspired by the next phase of growth and development in neuro-oncology here at Children’s.”
Backed by an international spirit of partnership, and the passionate support of organizations like The Rory David Deutsch Foundation, Dr. Goldman and the team he leads continues to inspire hope that this shared mission is one that will indeed be achieved.
Radiothon proved another big hit for Children’s Memorial
Chicago radio station 101.9 FM, The Mix, once again took to the air in August for the Eighth Annual Eric & Kathy’s 36 Hour Radiothon benefiting Children’s Memorial Hospital. The Radiothon raised over $10,000,000 for the hospital over the previous seven years, and this year brought in $1,753,985.23 in thirty-six hours. Broadcasting live from the Siragusa Lobby of Children’s Memorial, energetic morning personalities shared the moving stories of children, parents, doctors, nurses, and staff in an effort to raise funds for this life-saving institution. Proceeds from the event goes toward pediatric research, patient care, education, and advocacy. Thanks to the determined efforts of the staff at WTMX and the generous pledges of its listeners, the hospital continues to work toward medical advances that can make a difference in the lives of its young patients.
Duke’s Tumor Center sees progress through various angles of research
As Dr. Stewart Goldman of Children’s Memorial Hospital makes clear, it is only though collaborative efforts that a cure for pediatric cancer can be found. In partnering with Children’s as well as The Preston Robert Tisch Brain Tumor Center at Duke University, The Rory David Deutsch Foundation has not only supported the work of leading researchers at these institutions but also those in the field that communicate and cooperate with these institutions.
Through The Rory Deutsch Endowment Fund, Duke’s Tisch Brain Tumor Center continues to pursue a broad variety of projects aimed at advancing treatments of childhood brain tumors. Presently, there is a $1,609,556 book value of the endowment and a $2,412,000 market value, and the endowment is generating $65,000 to $75,000 of income each year. This income increases with each contribution to the endowment and with the increases in market value. “During the next year, these funds will be used to support two new recruits at the center,” according to Duke’s Darell D. Bigner, M.D., Ph.D., Cancer Research Professor at the Tisch Brain Tumor Center. “The first is a post doctoral fellow and the second a junior faculty member, both of whom will be developing new therapeutic approaches with targeted therapy against molecules preferentially expressed on pediatric brain tumors and not on normal brain.”
The impressive number of projects being supported by the fund includes work to determine the full genetic abnormalities in pediatric astrocytomas. “This is based on the advances of the human genome project and the National Cancer Institute projects in determining all of the genetic alterations in specific cancers,” explains Dr. Bigner. “The National Cancer Institute is not undertaking childhood brain tumors at present because the extensive information that they are acquiring will be posted on a public database and it is possible that the identity of the patients could be determined. We will obviate that by guarding confidentiality.”
A second basic molecular genetic study at Duke will involve the application of gene expression analysis to determine which growth signaling pathways are turned on in pediatric brain tumors. That information will then allow specific testing of agents inhibiting those signaling pathways to be implemented with childhood brain tumors. In addition, a major study performed on white blood cells from childhood brain tumor patients at Duke will be carried out to determine which genes that have to do with metabolism of cancer chemotherapeutic agents are present and active among different patients. “This information will help us do a better job of managing toxicity and therapeutic effect,” says Dr. Bigner. The Tumor Center will also conduct a study to identify new compounds that activate a set of enzymes called caspases, which can lead to programmed cell death in childhood brain tumor cells.
At Duke, a talented young investigator has identified a group of compounds that are inhibitors of the major signaling pathways involved in medulloblastoma. This investigator will soon begin studying a second signaling pathway to develop ways of inhibiting it. Another investigator is involved in the identification of so-called “cancer stem cells” or the “tumor initiating cells” in brain tumors—which is one of the major new research areas in all cancers. “This investigator has identified ways to purify those cancer stem cells from childhood brain tumors and has identified several of the major mechanisms of treatment resistance in those stem cells,” says Dr. Bigner. “Continued work in this area will lead to new therapy directed at eradicating these cancer stem cells.”
Also benefiting from The Rory Deutsch Endowment Fund is a project at Duke that centers on the development of radioimmunotherapy for medulloblastoma and astrocytic tumors of childhood with a peptide that binds the cells labeled with a radioactive isotope called L utecium-177. This work is anticipated to enter clinical trial during 2008 or early 2009. Other targeted therapies are being developed with antibodies and immunotoxins reactive with cell surface molecules on medulloblastomas and pediatric astrocytic tumors.
Some funds from The Foundation’s endowment are used each year to maintain the Tumor Center’s childhood brain tumor tissue biorepository, which is necessary to provide tissue for most of its research projects. “The endowment also helps us advertise our search for developmental research projects to our 350 faculty members, and supports the career development awards we present to outstanding young investigators in the early stages of their careers to help them reach independence,” says Dr. Bigner. “We greatly appreciate The Rory Deutsch Endowment. It’s quite simple; through this endowment The Foundation allows us to conduct childhood brain tumor research that would not be possible otherwise.”
Rory plays part in a season to remember
When Mitch Ruchim’s son Kyle played little league baseball with Rory, Kyle never forgot that Rory wore jersey #9. “Since Rory died, all of my kids have worn #9 on their sports team uniforms as a way to honor Rory’s memory,” says Mitch. Kyle still wears the number and is now a member of a championship team that has also adopted Rory’s name and his courageous spirit. Through its winning ways, Illinois Express/Team Rory has raised close to $30,000 for The Foundation. This team is committed to raising even more before its sensational tournament season comes to a end.
Illinois Express/Team Rory is an elite sixteen and under travel team made up of top tier players from various high schools in the area. They compete against other top teams across the Midwest. Through his work with The Foundation, his fondness for Rory, and his long friendship with Ross, Mitch came up with the idea to gather sponsors. The sponsors would contribute money to The Foundation based on each team victory as well as individual feats such as home runs. “I took it to the team and the parents of team members before the tournament season began,” he says. “They not only enthusiastically supported the idea but decided to add Rory’s name as well. Each player got to know Rory’s story and the courage he displayed in battling the disease, and I think it’s no accident that the team has come together and is now recognized as one of the best in the Midwest.”
Raising $750 from each of its thirty-eight wins, Illinois Express/Team Rory became nationally recognized and competed in national tournaments in Atlanta at the end of the July and in Las Vegas this past summer. When the club claimed a championship at Oakton Community College in early July, Ross was in the stands and was handed the team trophy after the game. “The kids were insistent that I hold it,” Ross said. “It was quite a day, and realizing that these kids have accomplished so much with Rory’s name on their jersey is really a great feeling. I think their connection to The Foundation has helped the players recognize a higher purpose other than themselves. They are a true team in so many ways.”
The players take great pride in their uniform and what it stands for, according to Mitch, who describes himself as the George Steinbrenner of the team. “In fact, curious players and coaches from other teams have asked head coach Dan Petrich about Rory,” Mitch says. “They are interested in what Team Rory means, so his story and the work of The Foundation is reaching more and more people as the team continues to win. College coaches who see our players as top prospects have visited our team website and learned more about The Foundation. It’s really been exciting on many different levels.”
Just as others have found unique ways to raise funds for The Foundation, Mitch says this is the team’s way of supporting further medical research while celebrating the memory of a special #9. “Rory was always a special kid,” says Mitch. “He loved baseball and loved to have fun. Kyle even has an engraved picture of Rory on his bat, knowing that if he had lived Rory might even be playing on this team. As Ross always likes to say, ‘To win, you have to care about each other.’ That’s what this team has done. They will always remember this season, and will always remember that Rory was a big part of it.”
Children’s theater company prepares another powerful performance
The Lake Forest Children’s Theatre Company is at it again. For more than fifteen years the company has invited children aged five to thirteen, regardless of their previous experience, to join a twelve-week program that culminates in a first-class production. In fact, the program is made up of a number of different groups—in Highland Park, Deerfield, Lake Forest, Winnetka, River Forest, and Chicago—that hone their acting skills over the course of those twelve weeks. They then perform the selected production on a stage in their area. Since 1999, the company has donated a portion of the proceeds from these performances to The Foundation and its fight against pediatric brain tumors. This year will be no different, as a new crop of budding actors prepares for a fall staging of “Willy Wonka Junior,” an adaptation of the classic film about a mystical and musical chocolate factory.
Margo Proeh, the company’s director, continues to lead a production staff skilled in musical theater that works with students in achieving the basic skills of dance, drama, and music. “We also develop their social and personal skills,” says Margo. “That’s where our relationship with The Foundation over the years has helped them discover a sense of purpose and a spirit of pride and leadership. This program is an experience they remember and take with them wherever they go.”
Some of the company’s past students have continued to build on their theatrical experience, whether as performers or team members behind the scenes. “Our kids learn a variety of skills, including stage directing and technical aspects of the theater,” says Margo. “The program gives them a great foundation for their continuing education, whether it is in the arts or anything else. I’m not surprised that we continue to draw so many interested kids from around the Chicago area, and I’m not surprised that they find inspiration in our support of The Rory David Deutsch Foundation. There couldn’t be a more important cause.”
For more information on the company’s program or production schedule, visit www.thechildrenstheatreco.com or call 847-831-0555.
Celebrating ten years of a collective commitment to hope
Excitement is building for the 6th Family event
Robin Baba and Beth Conen cannot believe it’s been ten years. In July of 1998, just a day after Rory died of a brain stem glioma, a type of pediatric brain tumor, Rory’s family established The Rory David Deutsch Foundation to raise money for pediatric brain cancer research. In the years since, The Foundation has done much more than provide an impressively steady funding stream to medical researchers in the field. “The Foundation has brought people together, raised awareness about the disease, and organized events where kids of all ages have great fun,” says Robin, who has partnered with Beth in co-chairing The Foundation’s signature event since its very first year. “So much good has come from a loss that is still tremendously difficult to come to terms with.”
Robin and Beth, both members of The Foundation’s Board of Directors since its inception, are once again in the midst of planning for the biennial Rory David Deutsch Foundation Family Event. Drawing on the success of its last event two years ago, which raised close to $400,000 and attracted more than 800 people, this year’s gathering will once again be held at the Highland Park Recreation Center. With the theme, “Reach For the Stars: A Carnival of Fun Celebrating a Commitment to Hope,” the event is set for Saturday, November 15, 2008. “We’ve worked hard to make these events better each time, and this year will be no different,” says Beth. “With ten years of great people contributing to great accomplishments, this is sure to be a special occasion.”
Inspired by Rory’s love of games, sports, family and friends, this year’s festival of fun will feature quite an array of games and activities as well as a delicious dinner, an exciting raffle, and an amazing silent auction. “It’s fun for the whole family, but Ross and Mindy have always wanted these events to focus on kids,” says Beth. “From the start, kids have played a significant role in this Foundation.”
Beth’s son and Robin’s son were both friends of Rory’s, and each of them have joined many other young people volunteering their help at different
Foundation events over the years. “From stuffing envelopes to running games or booths, Rory’s friends have been very involved,” says Robin. “Rory is still very present in my son’s life. He has a picture of Rory on his desk and he mentioned him in his Bar Mitzvah speech. Through The Foundation, he and other kids have learned how important it is to give back in any way you can. With Rory’s friends now graduating from high school, in the years ahead they are the ones that will continue to carry The Foundation forward.”
“There’s no greater tragedy than someone losing a child, and this loss was so personal to us,” says Beth. “Ross and Mindy’s incredible commitment to The Foundation has helped it maintain momentum over the years.” As Robin puts its, “They not only dedicated themselves to raising money for cancer research, they did their homework on how and where the money would be best spent. That’s what has made The Foundation’s Family Event, and so many of its other fundraisers so meaningful and memorable.”
Foundation events continue to support a team approach
Marc Miller says he knew from the day The Rory David Deutsch Foundation was established that Ross and Mindy would give their all to ensure that its work would make an impact on cancer research and on the people who joined them to support it. “Even before Rory’s death, they were committed to different charities and their community,” says Marc, who serves as the Vice President of The Foundation’s Board of Directors. “They are the epitome of people who give without being asked. That type of character, and their unending desire to help find a cure to this horrible disease, has really been the driving force of The Foundation for the last ten years.”
Active with The Foundation since its beginnings, Marc has seen Ross and Mindy’s giving spirit reflected in the many ways people have supported The Foundation since 1998. “Unlike other charities, we’ve not simply had one or two regular events but a collection of many different types of events,” he says. “So many people have found their own way to be a part of it. The generous and clever ideas have ranged from the man who played ‘100 Holes of Golf for Rory’ to the head of a produce company offering a percentage of sales over a holiday weekend. People have done whatever they can to raise money, and that also includes kids selling lemonade or offering their Bar Mitzvah money to The Foundation. We have contributions that range from $5 to $5,000. It’s people of all ages doing what they can because they care. It’s really been incredible.”
The historic timeline that follows highlights many memorable Foundation events over the years. Among those that stand out in Marc’s mind is the 2002 gathering billed as “An Evening With Coach K” that raised $230,000 for The Foundation. At the event, legendary Duke University basketball coach Mike Krzyzewski delivered what Marc describes as “an incredibly inspiring speech. This speech stressed that in working toward a cure to pediatric brain cancer we all must work as a team. I will always remember that evening,” Marc says. “Coach K reinforced the approach that Ross and Mindy have fostered from the beginning.”
Marc is a Rory team member always ready to help in any way necessary. “I’m basically on call,” he says. “Rory was like a son to me, and this organization is a way to do something to help other families that might find themselves in the same painful situation. We all know finding a cure is an uphill battle, and that can be frustrating. We continue to see progress, and in some cases that means a new treatment that allows a child to live a few more months than originally expected. The ultimate goal, however, is a cure. I know that Ross and Mindy will never give up. When you look at what they have done, and all of the people that continue to come forward to help, you see there are many people right by their side. We’re all in it for the long haul.”
JAB Produce’s ‘Rory Day’ continues to help foundation grow
Steve Serck says the day of Rory’s funeral was the saddest of his life. “We all hear about people who have experienced difficult tragedies, but for my family and friends Rory’s death was really the first one in our lives,” he says. “Knowing how devastating it was for us as friends of Ross and Mindy, it is more than unbelievable what they have done through The Rory David Deutsch Foundation in the last ten years. That’s what makes this charity so meaningful and heartfelt, their drive and their ability to bring people together to try to prevent this from happening to other families.”
Steve’s oldest son was a friend and classmate of Rory’s. “At the time, he was too young to understand just how much Rory went through,” Steve says. “Being involved in the activities of The Foundation has helped all of my kids understand how fortunate they are and how precious life is.”
As a member of The Foundation’s Board of Directors, Steve has always played quite an active role in The Foundation. For the last five years his company has designated a percentage of its receipts from one of its most profitable days to The Foundation. The company, JAB Produce, sells fresh produce to grocers throughout the Chicago area. This year’s “Rory Day,” as it has been dubbed, was held on June 30th, the Wednesday before the July 4th weekend. “This is the week that our biggest orders come through,” Steve explains. The June 30th orders added up to a generous contribution of five percent of its sales, or $6,000, to The Foundation.
Having accompanied Ross on trips to The Preston Robert Tisch Brain Tumor Center at Duke University, where The Foundation directs a portion of its funding, Steve recognizes the complexities of the cancer research being conducted there. “We know how important the funding is to these researchers, and how much more is needed to increase pediatric cancer research in other institutions,” he says. “The researchers themselves are burdened by having to spend time seeking out funding, time that could be spent conducting further research. So it is a tough battle on different levels, but progress is being made and we have to keep doing what we can to support the process.”
For Steve, that means continuing his annual “Rory Day” at JAB and promoting awareness and involvement through The Foundation. “It’s a collective effort that continues to grow in size and strength,” he says. “For Rory and for kids like Rory, the fight against this disease won’t end until a cure is found.”
Barry Bakal ups his game, and his support for Rory
When mixing his love of golf with his loyalty to The Rory David Deutsch Foundation, you could say that Barry Bakal tries to get as much out of every swing as he can. A year after playing 100 holes of golf with sponsorship support that raised $20,000 for The Rory David Deutsch Foundation, Barry returned to Hillcrest Country Club on July 30th of 2008 and rounded up his effort, so to speak, to 108 holes of golf for Rory. “With 108 holes, it made it an even six rounds of golf,” says Barry. “Of course, it also created an opportunity to raise even more funding.” That it did, as Barry’s one-day, one-player event netted close to $40,000 for The Foundation.
With an aim to raise awareness as well as funds, Barry once again sought out sponsors to donate dollars by hole and by score. Deepening his own investment in his game, Barry pledged $50 for every Birdie he sunk, and $40 for every Double Bogey or greater. A broad collection of supporters responded to his challenge.
“It’s a great feeling to know you can take something simple like playing golf and turn it into something that can benefit a worthy cause,” says Barry.
“That’s what makes this Foundation so unique. For ten years, Ross and Mindy have demonstrated such dedication and enthusiasm about working toward a cure for pediatric brain cancer that they encourage ideas like this. With all of the different events and people that are connected to The Foundation, it keeps the mission focused and fresh.”
While he is careful to pace his one-man events, Barry is sure to be out on the course in the coming years to win another round for Rory. “I realize I can’t do this forever,” Barry says with a laugh. “With more and more young people getting involved in The Foundation’s activities, I’m sure there will be many who come up with their own personal ways to generate support.”
In fact, Barry’s stepson, Barry Glass, helped coordinate an annual Powder Puff football tournament that raised funds for The Foundation in 2005 and 2006. Sponsored and organized by Zeta Beta Tau Fraternity at the University of Illinois, Urbana/Champaign, the tournament featured a competition among twelve sorority teams with fraternity brothers like Glass serving as coaches. “The next generation is already doing their part to keep this Foundation moving forward for the next ten years,” says Barry. “The ultimate goal, of course, is that someday such events will not be necessary because we will have found a cure.”
Displaying the foundation’s commitment at Campus Colors
Barbara Rubenstein very much considers herself, her family, and her company a part of The Rory David Deutsch Foundation. “That tells you about the way The Foundation operates,” she says. “It creates a bond among people, and we are happy and proud to be a part of it and its mission.”
With her husband Neil, Barbara owns and runs Campus Colors, which is the nation’s largest retailer of collegiate licensed clothing. For more than six years, the company’s Highland Park store has made a priority of promoting the merits of The Foundation to its customers. “We not only highlight The Foundation’s events, but we also come up with Rory events of our own,” says Barbara. “Most of our customers are well aware of this, and look forward to new ideas we come up with.”
For several years the store coordinated a “March Madness” raffle. Customers who purchased $50 or more at any Campus Colors store were automatically entered into the raffle and eligible to win an autographed Michael Jordan jersey. A purchase of $100 or more was worth two raffle tickets, and so on. The proceeds of raffle ticket sales were donated to The Foundation. In 2006, this event raised $4,000. “The raffle was always a big hit, especially with kids” says Barbara. “With Michael not playing anymore, we have added other Rory tie-ins. We have sold Rory wristbands and Rory watches, which the kids love, and we have turned promotional posters into fundraising items.”
The posters the store receives are part of an annual promotional campaign for the national “Wear Your College Colors to Work Day.” These larger than life posters have featured celebrities such as country singer Kenny Chesney. “Instead of giving them away, we would take a $50 or $100 donation for the posters and pass that amount on to The Foundation,” Barbara says. “It’s all about finding unique ways to help celebrate Rory’s life and to help find a cure.”
Barbara is currently in the midst of putting together a Campus Colors promotion that ties in with The Foundation’s Family Event in November. “We’re really excited about this event,” says Barbara. “Last year’s was so much fun. My granddaughter, who was almost two at the time, was even out there dancing with the Highland Park Jammers. It was a great success. We will play a bigger role in it this year, and will have a prize that involves our stores. This charity is part of our business. Much more than that, though, it is part of our lives.”
With stores in Highland Park, Hinsdale, Naperville, and Chicago’s Water Tower Place, Campus Colors is the nation’s largest retailer of collegiate licensed clothing, representing over 250 colleges from coast to coast. For more information, call 847-433-2300.
Rory’s memory continues to inspire Foundation’s mission
Not everyone active in The Rory David Deutsch Foundation had the pleasure of meeting Rory before his death ten years ago. It is memories of Rory that keep Allen Sutker focused on the mission of The Foundation. He did know the boy with the infectious smile and an enthusiasm for everything from sports to space. “I think about Rory every day,” says Allen, who is a longtime friend of the Deutsch family and has been a member of The Foundation’s Board of Directors since its inception. “He was a special kid. I have two Rory pins on my dresser at home and they are a constant reminder of him and what The Foundation is all about.”
As Allen points out, almost everyone has been touched by cancer in some way and many have imagined the pain of having a child suffer from this disease. “That draws people to support and become involved with organizations like The Rory David Deutsch Foundation,” he says. “The battle against cancer is something we are all connected to, and for me that connection is Rory—who he was as a person and who he would have become. In contributing to the effort to find a cure, and along the way helping kids with brain cancer live longer and more comfortably—which can be a blessing in itself—The Foundation is a very real way of keeping Rory’s memory alive.”
In fact, before Rory’s death Allen had organized fundraising events in the memory of others lost to disease. He, Brian Abrahams, and other business partners founded the Charita-Ball in honor of Brian’s father, David Abrahams, who died of cancer, and in honor of their friend, Jerry Shaftal, who died of leukemia as a young adult. For two years, the annual event raised funds for organizations supporting cancer and leukemia research. In 1999, the Charita-Ball included the newly established Rory David Deutsch Foundation among the recipients of its event. Drawing more than 2,000 people to the Navy Pier Ballroom for an evening of dinner and fun that included casino games and extravagant raffle prizes, the Ball raised $650,000. With a third of this total donated to The Foundation, the event was instrumental in helping The Foundation gain early momentum to support pediatric brain cancer.
With the success of the Charita-Ball behind him, Allen made a full commitment to The Foundation and has helped continue to fuel its momentum as an active board member. “Our strategy in organizing fundraising events and activities has been to be consistent rather than overwhelming people with invitations and solicitations,” he says. “At the same time, our larger events have been balanced by all of those more personal fundraising ideas that people have come up with on their own. We’ve had everything from kids donating bar mitzvah money to businesses launching special sales events for Rory to people participating in triathalons. It has really been amazing.”
Allen says the longevity of The Foundation and the enthusiasm it has sustained is due to Ross and Mindy’s leadership, personality, and dedication to the work of The Foundation. “They are great motivators, but they have also led The Foundation with a realistic approach,” he says. “They know this is a tough one, that they might not see a cure in their lifetime, but they continue to see every step The Foundation takes to direct more funding to the best researchers in the world as another step toward a cure. That’s what I’m reminded of every day when I look at those Rory pins.”
Continuing to inspire contributions with the ultimate goal in mind
As leader of the live auction aspect of The Rory David Deutsch Foundation Family Event in November, David Duckler is excited about what he calls the “amazing” items that have already been donated for auction. He notes the prospect of also landing tickets to television productions that could include “Saturday Night Live,” “American Idol,” and award shows through his good friend Richard Lovett, who heads Creative Artists Agency (CAA). David emphasizes that the ultimate promise of every auction item, every independent donation to The Foundation, and the money raised from every Foundation event is a contribution to finding a cure to pediatric brain cancer. “That’s the ultimate goal,” he says.
As a board member since The Foundation’s inception, David says the action and enthusiasm that so many have put forward in the past ten years has been driven by that single goal. “Ross and Mindy and the rest of Rory’s family have demonstrated their constant dedication to that goal, and others have responded to that goal by making a long-term investment in The Foundation,” he says. “If all of the independent fundraising events and activities that have benefited The Foundation continue to succeed, then one day there will no longer be a need for those events and activities. They will simply be celebrations. We have to acknowledge that, while we’ve been at it for a while, we are indeed making progress toward that goal.”
David is among the board members who have met with researchers receiving funding through The Foundation. “We have seen the difference that it makes,” he says. “In some cases, specific funding has directly led to doctors adding another member or two to their team in a particular area of research. Part of their progress includes developing treatments that keep patients alive longer, knowing that the longer a patient lives the better chance he or she has of benefiting from further advances. In this battle it comes down to money that goes to continue these efforts, which is why The Foundation is structured to ensure that administrative and other costs don’t dilute the money that is raised.”
It’s this structure that David says has helped The Foundation build such a loyal and continually growing coalition of supporters. “We all are connected to a person who has suffered from cancer,” he says. “As Ross and Mindy see it, and have always seen it, The Foundation offers all of us an opportunity to contribute to a cause not simply that has impacted their family, but one that continues to impact all of our families.”