‘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.”