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Friday, December 2, 2016

Make IBDvisible for Crohn's & Colitis Awareness Week

Here is our CCFA Last Newsletter for December 2016 issue as we are Celebrating Crohn's & Colitis Awareness Week. Letter from our President & CEO It's difficult to adequately describe how debilitating Crohn's and colitis can be. The symptoms and complications that patients experience are, for the most part, invisible to the average eye. On their exterior, patients often don't look sick, even though on the inside they're suffering. That's why people refer to Crohn's and colitis as invisible illnesses. Today marks the start of the fifth Crohn's & Colitis Awareness Week. Over the next seven days, we will be sharing resources, stories, images and more to help make IBDvisible. Each day will focus on a specific topic—such as pain, fatigue, complications and mental health—in an effort to make visible the reality of living with IBD. There are a variety of ways that you can get involved to help make IBDvisible. Visit our website to see all of the different options, and read about a few of the opportunities below. Sincerely, Michael Osso President & CEO Larry Nance, Jr.'s Story It's hard to imagine there was ever a time when Los Angeles Lakers power forward Larry Nance, Jr. didn't play sports. However, in the years before he was diagnosed with Crohn's disease, Nance suffered from debilitating fatigue, which prevented him from doing anything—including practicing or playing sports. Read Nance's inspiring story about how he coped with the fatigue, and how he has blossomed as an NBA rookie in spite of this debilitating symptom. READ MORE ► Make the Call Today! We are dedicating TODAY, the first day of Crohn's & Colitis Awareness Week, to IBD advocacy. You can be an advocate by participating in our National Call-In Day. Take a few minutes to call your legislators, share your IBD story with them, and encourage them to join the Congressional Crohn's & Colitis Caucus. LEARN MORE ► Let's Chat about IBD We're hosting several social media chats during Crohn's & Colitis Awareness Week about different IBD topics — we hope you can join us for one! Twitter chat with Mike McCready, Pearl Jam's lead guitarist and Crohn's patient, TODAY from 5-6 p.m. EST. Tweet your questions using #IBDvisible. Facebook Live video chat about IBD and advocacy TONIGHT (December 1) from 8-9 p.m. EST Twitter Chat about mental health and IBD on December 5 from 8-9 p.m. EST. Tweet your questions using #IBDvisible. Twitter chat with Olympic gold medalist Kathleen Baker on December 7 from 2-3 p.m. EST. Tweet your questions using #IBDvisible. JOIN THE CHAT ► Join the Holiday Gift Match Your tax-deductible donation will be matched, up to $500K—and have 2X the impact on fighting IBD. Want a Quick, Easy Way to be #IBDvisible? Add our Twibbon to your social media profile picture in honor of Crohn's & Colitis Awareness Week! All it takes is a few minutes, and a couple of clicks, to support our campaign. LEARN MORE ► Join Our Thunderclap Another easy way to spread the #IBDvisible message this week is through Thunderclap. Simply "donate" a Facebook message, tweet, or Tumblr post—and on December 7, all of the messages will be sent out at the same time, creating a social media "flash mob." Sign up here! LEARN MORE ► Share Your Story We want to hear about your relationship with IBD and how you're being #IBDvisible during Crohn's & Colitis Awareness Week. Tell us your story—and you might see it featured on our website in the future! LEARN MORE ► Walk to Win! Take Steps is giving away an Apple Watch or Samsung smartwatch to one lucky Take Steps participant. Register for your local walk and donate $50 by the end of Awareness Week to be entered to win. Get all the details at LEARN MORE ► Have You Seen Our Updated Advocacy Site? Check out our updates to CCFA's advocacy website, including new action alerts for 2017 and more information to help you communicate with your legislators. LEARN MORE ► December Webinar On Wednesday, December 14 at 8 p.m. EST, we'll discuss the latest advancements in IBD with gastroenterologists Dr. Eugene Yen from NorthShore University Health System and Dr. Robert McCabe from the University of Minnesota. Sign up today! SIGN UP TODAY ► CCFA provides a comprehensive database of studies, clinical trials, and other research opportunities on Crohn's disease and ulcerative colitis. Here are a few of the recently added studies: A Phase 3 Randomized, Double-Blind, Placebo-Controlled Study to Evaluate the Efficacy and Safety of Vedolizumab Subcutaneous as Maintenance Therapy in Patients With Moderately to Severely Active Crohn's Disease Who Achieved Clinical Response Following Open-Label Vedolizumab Intravenous Therapy An Open-Label, Multicenter, Postmarketing, Milk-Only Lactation Study to Assess Concentration of Vedolizumab in Breast Milk of Lactating Women With Active Ulcerative Colitis or Crohn's Disease Who Are Receiving Vedolizumab Therapeutically 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 | 8​00-​93​2-​2​423

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