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Thursday, August 18, 2016

Take Action This August

As we are wrapping up the month of August here is our CCFA News Letter for the month of August Letter from our President & CEO I hope you're having a terrific summer! If you'll be around this month, August is a great time to visit members of Congress—since they travel to their home districts before returning to D.C. in September to finalize important legislation, including the annual spending bills. We encourage you to schedule local meetings with your legislators to ask them to include funding in the annual spending bills for federal agencies that study IBD. For instructions, handouts, and additional information, see CCFA's Visit Your Legislator webpage. Thank you! Michael Osso President & CEO Calling all College Students CCFA's National Council of College Leaders (NCCL) works to increase awareness of Crohn's disease and ulcerative colitis through youth-focused advocacy and fundraising. Youth leaders become advocates for patients through local and national campaigns. NCCL members also develop leadership skills and prepare for even larger roles as advocates for people with Crohn's and colitis. We are currently looking for college freshmen or sophomores who have IBD (as well as a passion for volunteerism and leadership) to join our council! Applications for 2017 are now live—and due on October 14th, 2016. To access the application or to learn more about the NCCL, click here. LEARN MORE ► Transforming Lives On The Way To Cures "Laissez les bon temps roulez" through the Big Easy as Team Challenge hits the streets of New Orleans! Team Challenge will help train you for a 10k, Half Marathon, or Marathon at this iconic event… and you’ll see it’s about so much more than the race. Read up on how you can join the Team Challenge family—and get the support of a team that is helping to end IBD. You can also like us on Facebook to see what our Alumni have to say about this wonderful group. READ MORE ► Have You Joined The Members Match Yet? You can have TWICE the impact on defeating IBD. Make a gift today—and help fund vital research at CCFA. It's National Immunization Awareness Month Immunizations are important for everyone, but they are especially important for patients with chronic illnesses like IBD, whose immune systems may be compromised. Make sure you speak with your doctor to ensure that you are up-to-date on immunizations to prevent future illnesses. READ MORE ► A Chance to Win NFL Tickets Supporting Take Steps could land you in a seat at a LIVE NFL game this fall! For every $1,000 you raise between 8/22 and 9/16, you get an entry to win two NFL game day tickets, round-trip airfare, and a one-night hotel stay. REGISTER NOW ► Back to School Thriving in the school environment is often a challenge for children with IBD. That's why it is so important for teachers and other school personnel to understand these chronic intestinal illnesses. Check out our guide for teachers and school personnel working with IBD patients. LEARN MORE ► CCFA provides a comprehensive database of studies, clinical trials, and other research on Crohn's disease and ulcerative colitis. Here are a few of the recently added studies: Development Of a Patient-Centered IBD Colorectal Communication Tool. Patients with Crohn's and colitis are invited to take part in telephone interviews to share their views and experiences with colonoscopy and perceptions of colon cancer. This study will allow investigators to better understand how patients with Crohn's and colitis make decisions about colonoscopy and the barriers they face in undergoing colonoscopy. A Phase 2, Randomized, Double-blind, Placebo-controlled, Parallel Group, Multi-center Study to Investigate the Safety and Efficacy of APD334 in Patients with Moderately to Severely Active Ulcerative Colitis—to learn whether an investigational medication is safe and if it will effectively reduce the inflammation of the gut in patients with ulcerative colitis (UC). This is an 18-week study that will allow patients to track disease symptoms under the care of a physician while regularly undergoing testing and screenings. Ethical Issues in Prescription Drug Access under the Restricted Distribution Program for Tysabri. This study is looking for participants who have Crohn’s and have been prescribed Tysabri within the past year. Patients will take part in a 60-minute interview, and results will determine how FDA-mandated Risk Evaluation and Mitigation Strategies (REMS) affect the prescribing and usage of drugs like Tysabri. 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. 7​33 Th​ird Av​en​ue, Sui​te 51​0, Ne​w Y​ork,​ N​Y 10​01​7 www.ccfa.org | 8​00-​93​2-​2​423 Talk with an I​BD Info​rmation Specialist at 88​8.M​y.Gu​t.P​ain | 8​88-​69​4-8​87​2

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