health & wellness Cure Kids First Michigan pays lead role in conference for kids with Inflammatory Bowel Disease. CARE KID fir Ruthan Brodsky I Contributing Writer ichigan's Pediatric IBD Foundation is the lead co- sponsor for a third meeting of federal regulators, the European Medicines Agency, medical industry representatives, academia, patients and researchers for col- laborative, stakeholder discussions March 30-31. Federal regulators include the Food and Drug Administration (FDA) and the National Institutes of Health (NIH). A major agenda item for the meeting addresses the issue of how to expedite the approval process of IBD medicines for children and to efficiently monitor patient safety by starting a disease-specific National Public Registry available to all providers and patients. Pediatric Inflammatory Bowel Disease M 36 March 5 • 2015 is a group of chronic disorders that cause pain, swelling and inflammation of the small and large intestine. The two most common of these disorders are Crohn's Disease and Ulcerative Colitis. The problem is that despite universal coverage, more than 70 percent of the medications used in children with IBD are prescribed off-label because they were tested for adults and not for children. Insurance companies can deny parents insurance reimbursement for these pre- scribed off-label medications sometimes resulting in IBD medications costs of over $75,000-$100,000 per year. "The Pediatric IBD Foundation par- ticipated in GREAT1 (Gastroenterology Regulatory Endpoints and the Advancement of Therapeutics) 18 months ago, then we were a co-sponsor for GREAT2 and now we are the lead co-spon- sor for GREAT3," says Dr. Eric Zuckerman of Bloomfield Hills, board chairman of the Pediatric IBD Foundation. Zuckerman, also a FDA Patient Representative, will be presenting a model for a public National IBD Registry at GREAT3. "The Pediatric IBD Foundation has come a long way:' continues Zuckerman. "We are doing all the administrative responsibilities for GREAT3 including reg- istration, travel and hotel arrangements, and helping with the agenda. I think we were selected because we are a nonprofit in the right place at the right time and receive our funds from professional orga- nizations, parents and other foundations. "Although we are the smallest group at this meeting, we are highly regarded by those attending and are honored to take on these tasks:' Zuckerman is one of the founding members of the Pediatric IBD Foundation, established in 2008 by a group of volunteer parents. He has held the position of board chairman since the foundation's inception helping to set the foundation's ground work and infrastructure through advocacy, research and education. Today, five of the foundation's six board members are located in Michigan. "Of the 1.7 million IBD patients in the U.S., one-third had their disease diagnosed in childhood and 50 percent had symp- toms before age 18:' explains Zuckerman. "Unfortunately there is a disproportional amount of resources dedicated to studying this disease when it first strikes in chil- dren because they often provide a better opportunity than adults to understand what triggers these diseases in genetically susceptible individuals. "Interestingly, cases of pediatric Crohn's Disease have tripled in the last decade continues Zuckerman. "In addition, the incidence of IBD is higher in patients of Jewish descent. What's more alarming is the increase of IBD in children under age 6 and a larger number diagnosed during their first year. The Foundation is focused on finding safer, more effective treatments and to "Cure Kids First" as healthier chil- dren make healthier adults:' Advocacy For Kids "The Pediatric IBD Foundation is in a growth period and moving forward con- structively as it adjusts to increasing its collaborative efforts with other profes- sional groups and fostering interest in other foundations:' says Alan Singer of Bloomfield Hills. "I've been friends with Eric for many years and was very much aware of the family's struggles when their daughter was diagnosed with IBD disease as an adoles- cent. I understand many of their problems because I've been dealing with Crohn's dis- ease myself since my early 40s. I became a foundation board member four years ago so I could use my experience both as a patient as well as serving on many Jewish and other nonprofit boards. "There are many great programs in the works as we expand our network of getting others to help us while maintaining a vol- unteer parent organization that uniquely focuses on children and is supported by parents and by other foundations inter- ested in our mission:' says Singer. Research For A Cure The foundation supports the oldest and one of the largest collections of pediat- ric IBD tissue and blood samples in a biorepository at Massachusetts General Hospital. This resource is used by researchers and industry pursuing new diagnostic tests for IBD. "One of our foundation's research initia- tives, called the Biome-Genome Study, is analyzing the more than 1,000 samples of tissue and blood located in the repository freezer, looking for which bacteria triggers which gene says Zuckerman. "For instance, we already know that what triggers the disease in Iowa is differ- ent than what triggers it in Israel. We are also looking for which gene is carried in certain families by using saliva samples for DNA detecting:' Coordination With Israel According to Zuckerman, more than 800 physicians partici- pated in the foundation's medical education pro- gram in its first year. The foundation is also in discussions with an Israeli IBD organiza- Dr. Eric tion to collaborate on Zuckerman educational and research initiatives between the U.S. and Israel through the Michigan-Israel Business Bridge. "The hardest part for me was to real- ize that children are the most neglected demographic in IBD research and have no voice says Amanda Fisher of Birmingham, IBD Foundation board member. "Parents see their children in pain and are unable to provide medication because most are considered off-label and not approved for use in this age group. Philanthropy runs in my blood, especially when it's something I feel passionate about. I'm going to do whatever I can to make an impact and help:' "We in Michigan have this opportunity to lead a collective effort and help chil- dren and their families who live with this disease says Zuckerman. "We believe our Michigan group can serve as a catalyst for important discussions about pediatric IBD on a national level. We invite parents who are interested in learning more about us or in supporting our mission to contact the Pediatric IBD Foundation at www.pedsibd. org." ❑ Donations can be made online or mailed to: Pediatric IBD Foundation, ao Tucker, Saltzman and Dyer, 50 Congress St., Suite 430, Boston, MA 02109.