Reporting on What is going on in the World. I'm a Crohn's Advocate and currently a Volunteer for the Crohn's and Colitis Foundation Of America San Diego and Desert Area Chapter.
Tuesday, May 19, 2015
Today is World IBD Day
Here is the May issue of CCFA Newsletter. Providing Hope and Inspiring Action | Latest News from CCFA Crohn's and Colitis Foundation of America Letter from our President & CEO In honor of today being World IBD Day, CCFA and more than 40 countries around the world are releasing videos as part of a global video campaign that calls for anyone impacted by inflammatory bowel diseases (IBD) to share their story in a short video with the unifying theme of #UnitedWeStand2015. Worldwide, five million people live with Crohn’s disease and ulcerative colitis. All videos can also be viewed on the World IBD Day website.
We are proud to announce that for the fourth year in a row, we have achieved a 4-star rating from Charity Navigator – America's premier charity evaluator – for sound fiscal management, commitment to accountability and transparency. Charity Navigator highlights the work of efficient, ethical and open charities to give donors confidence in the charitable choices they make. Only 8% of the charities rated have received at least 4 consecutive 4-star evaluations, which indicates that we outperform most other charities in America! We are extremely proud of this rating and hope it reinforces that we are putting your generosity to good work.
Richard J. Geswell, CCFA President and CEO
Richard J. Geswell
Richard J. Geswell
President & CEO
Introducing Game-Changing Research Initiative: IBD Plexus
CCFA is excited to announce a game-changer for IBD research – IBD Plexus. Thanks to a $17.5 million grant from The Helmsley Charitable Trust, this multi-dimensional knowledge platform integrates scientific, medical and patient data. IBD Plexus is one of our biggest research initiatives yet, involving every stakeholder – from academic and industry researchers, to clinicians and other healthcare providers, and more than 40,000 patients of all ages. Designed to enable novel research and speed progress toward precision medicine, CCFA hopes IBD Plexus will lead to better diagnostics, treatments and, ultimately, a cure for those with IBD.
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Support Crohn's and Colitis Fairness Act
Advocacy is an important part of our mission. In our ongoing efforts to support IBD research, we are happy to report that IBD has been listed as condition eligible for study under the Department of Defense (DOD) Peer-Reviewed Medical Research Program. As a result, five IBD research grants were recently announced by the DOD. The more research being conducted, the closer we are to cures. To learn more about CCFA advocacy and to get involved, visit our website.
The New York State legislature introduced NY Bill A00277 to address bathroom access issues for IBD patients. Contact Katie Pouga (Greater NYC area including Fairfield county) or Chris Joyce (rest of New York State) to help support this bill!
Inform Yourself: Complementary and Alternative Medicine
Many patients are interested in using complementary and alternative medicine (CAM) in addition to their current medical therapy. While less research has been done on the safety and effectiveness of CAM, more information and evaluation is being made available as the number of scientific trials for these therapies increase. Always discuss the risks and benefits with your doctor when considering any kind of new therapy. For more information, please check out our fact sheet, reach out to our IBD Help Center at firstname.lastname@example.org, or watch our new webcast archive on CAM.
Help us find cures
Your gift funds cutting-edge research and supports programs at CCFA. Please donate today and help us find cures!
Take Steps this Spring
It's been a great spring walk season so far and we're not stopping. We will be Taking Steps until the end of June so there is plenty of time to get involved. If you haven't already, we encourage you to find a walk near you by visiting our website.
Facebook Live: Complementary and Alternative Therapies
Wednesday, May 20th from 5pm-6pm EST. Join Dr. Joshua Korzenik from Brigham and Women's Hospital as he answers your questions on Complementary and Alternative Therapies.
TUNE IN ►
Tweetchat on World IBD Day
Our next CCFA tweetchat is today, Tuesday, May 19th – World IBD Day! From 4pm-5pm EST, we'll be discussing and answering questions about IBD. Join the conversation on Twitter using #WorldIBDDayQA. Follow us @CCFA and @IBDHelpCenter on Twitter.
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Webcast on CCFA Partners
Want to join a community of over 14,000 members and participate in groundbreaking research for IBD? Be sure to join us for our webcast on Tuesday, June 2nd , 8pm-9pm EST to learn more about CCFA Partners: a patient powered research network.
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IBD Clinical Trials and 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:
A Phase III Randomized, Double Blind, Placebo-controlled, Multicenter, Parallel Group Study to Assess the Efficacy and Safety of Fixed-dose Combination RHB-104 in subjects with moderately to severely active Crohn's disease conducted by RedHill Biopharma.
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.
Take Steps Team Challenge
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