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Friday, April 18, 2014

Facing IBD as a Family

Here is What's going on in our CCFA April Newsletter. Letter from Rick Geswell, CCFA President & CEO Rick Geswell, CCFA President and CEO Warm wishes to all during this holiday week of remembrance and reflection! Are you ready to round up? Bridgestone has once again generously pledged to help raise money for IBD using a "round-up" program at over 2,200 locations nationwide. For the months of April and May, Bridgestone customers can round up their transactions to the nearest dollar to help fund CCFA's research. Tell your friends and family – now is the time to head to Bridgestone! Our research is expanding! Earlier this year, we worked with The Broad Foundation to incorporate the Broad Medical Research Program into our research portfolio. The program, which was founded in 2001, funds pilot research, enabling scientists to test initial ideas and generate preliminary data in order to qualify for larger research grants. We're thrilled by this new addition – it's just one more opportunity to generate promising research... and get that much closer to treatments and cures. Facing IBD as a Family Jack and Family In 2011, Philip (Pip) and Ellen noticed that their 11-year-old son Jack was eating more slowly, pushing food around his plate and sometimes not eating at all. Not long after, Jack had severe abdominal pain, diarrhea and fever. Soon, he was diagnosed with Crohn's disease. In the nearly three years since his diagnosis, Jack and his parents have done everything they can to make life with IBD easier – and so far they've made a huge difference. Read the family's story here. read more IBD Can Affect All Groups of People The Centers for Disease Control and Prevention has designated April as National Minority Health Month. Though IBD can affect anyone, Caucasians – especially Jews of European descent – are more likely than other racial groups to have IBD. However, studies show that the disease increasingly affects African Americans and Hispanics in the U.S. To learn more about the prevalence of IBD in different ethnic groups, visit our fact book here or reach out to the IBD Help Center at info@ccfa.org. Introducing GI Buddy for Androids Great news – our GI Buddy is now available as an Android mobile app! Now Android users can join online and iPhone users in managing and tracking key elements of their disease, participating in CCFA community forums and using Charmin's Restroom Finder app. With thousands of online visits and app downloads since launch, we're thrilled to expand the reach of GI Buddy... and we're not done yet! Keep an eye out for the upcoming launch across all mobile and online platforms. Learn more. APRIL 2014 ISSUE Sign Up for the Advances in IBD Webcast for Patients Have you signed up to join the Patient Review of our Advances in IBD 2013 conference? You'll hear about the conference's most important clinical research discussions from one of our leading IBD experts. The overview is on Wednesday, April 30, 2014 from 8-9PM EDT. Register now! CCFA Genetics Initiative The CCFA Genetics Initiative is hard at work to identify genetic pathways associated with IBD... and they're on the path to treatments and cures! Help fund crucial research today. Pregnant with IBD? Join us for a live Facebook Q&A session on Wednesday, April 23, 2014 at 5PM EDT. Dr. Aline Charbaty will answer questions about IBD treatment before, during and after pregnancy. Log on to Facebook and participate! IBD Clinical Trials & Other Studies CCFA provides a comprehensive database of studies, clinical trials and other research on Crohn's disease and ulcerative colitis. Some of the recently added studies include: • Out-of-Pocket Cost Burden in Pediatric Inflammatory Bowel Disease, conducted by Lucile Packard Children's Hospital, Stanford University • TELEmedicine for Patients with Inflammatory Bowel Disease (TELE-IBD), conducted by University of Maryland, Baltimore Deciding whether to participate in a clinical trial is an important personal decision, best made with a full understanding of the drug development process and a participant's role.

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