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.
Wednesday, June 18, 2014
CCFA Takes The Hill!
Here is What's happening with CCFA this is our June Newsletter issue. Letter from Rick Geswell, CCFA President & CEO
Day on the Hill Advocates 2014
Last week marked our 12th annual "IBD Day on the Hill," and 120 advocates headed to Washington, D.C. to share how IBD affects their daily lives. Among the advocates were patients, caregivers, supporters and members of Congress, including Rep. Ander Crenshaw and Rep. Jim Moran. This year was particularly momentous since we also launched our first social media advocacy campaign, "You Are Not Alone" with our National Council of College Leaders. Remember, advocacy happens all year round, and we hope you'll take part in this important effort to raise awareness!
The New York Times on IBD and CCFA
Part of our mission at CCFA is to raise public awareness about IBD and what it means for the 1.4 million Americans living with the disease. We achieved a significant milestone in this effort when The New York Times published an article on May 26 about IBD and CCFA's promising genetics and microbiome research initiatives. Dr. R. Balfour Sartor, a gastroenterologist at the University of North Carolina School of Medicine and our Chief Medical Advisor, is featured throughout the article – check it out!
Join an Online Support Group
Share your stories and experiences, exchange disease management tips, and make friends with people in your community who also suffer from inflammatory bowel disease. Patients, family, friends, and healthcare providers are welcome to attend. Learn more about support groups in your area.
Don't have a local support group in your area? Join our online support group to learn more.
Want to start a local support group? Learn more here or contact your local CCFA chapter.
What Treatment Works Best for You?
With so many options available, it can be overwhelming for patients and caregivers to choose a treatment that best meets their needs. Join us for an educational webcast focused on IBD treatments and the resources needed to make informed decisions about IBD management. In addition to learning about the risks and benefits associated with each treatment, you'll also be provided with the relevant questions to ask your healthcare team. Register today.
JUNE 2014 ISSUE
Traveling this summer?
IBD doesn't need to get in the way of your vacation plans. Make sure to plan ahead so you can be prepared! Find our traveling tips online here and here.
Help Us Get There
Treatments and cures are within reach – but we need your support! Donate now.
Team Challenge Participants
Are you ready for a challenge?
Get fit, make friends and change lives by joining Team Challenge! Through endurance training and fundraising, you'll find incredible strength inside yourself and fund vital IBD research. Watch the video to learn more!
Log on and track every mile you run or walk with Charity Miles by 7/18 and enter to win Las Vegas Rock 'n' Roll Half Marathon entry and 2 nights at Bellagio with Team Challenge! Go to charitymiles.org, click on the App Store, download the app and select CCFA! It's that easy.
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:
• A Phase I Study Evaluating Autolongous Bone Marrow Derived Mesenchymal Stromal for Crohn's Disease in subjects with moderate to severe Crohn's disease conducted by Emory University.
• A Study to Evaluate Prediction of Response to an Investigational Medication in Subjects with Moderately to Severely Active Ulcerative Colitis, conducted by Janssen Pharmaceuticals
• A Randomized, Double-blind, Placebo-controlled, Parallel-group Trial to Assess Clinical Efficacy and Safety of NNC0114-006 in Subjects with Active Crohn's disease, conducted by Novo Nordisk A/S
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.