Google+ Followers

Saturday, November 9, 2013

Hayden's story:4 years old living with UC

In the October 2013 Issue of CCFA'S Newsletter this was talk about. Letter from Rick Geswell, CCFA President & CEO Rick Geswell, CCFA President and CEO We have a lot going on at CCFA these days! I recently attended a conference in England focused on establishing standards for the care for IBD patients. A unified set of standards for quality care of people with IBD does not currently exist anywhere – and this has to change. The first step in developing these long overdue standards is bringing together people, organizations, institutions and governments to establish a protocol. In this country, CCFA has long played the role of convener and facilitator of knowledge on information aimed at cures and the quality of patient lives. In 2014, we will host the first U.S. IBD 2020 Standards of Care Meeting to continue this collaborative process of creating a comprehensive, well-executed and effective program. Time is critical. Too many patients go undiagnosed or lack the right treatments for their disease. IBD patients deserve quality care wherever they are seen. The time is now to improve our systems and the outcomes that true quality care can produce. CCFA Advocacy Priorities Rick Geswell & Congressman Donald Payne, Jr. On October 3, I met with Congressman Donald Payne, Jr., in Washington, D.C. to discuss CCFA advocacy priorities. The newly appointed congressman from New Jersey's 10th district listened with interest as I outlined CCFA's goals for raising awareness about IBD, improving access to care and conducting groundbreaking research. If you are interested in learning more about our advocacy priorities, please visit our website. Ask your legislator to support issues important to IBD patients. Reach out to your representative today! Hayden's Story: An Honored Hero Takes Steps Hayden Hayden is your typical healthy, active 4 year-old-boy – he loves sports, playing with friends, and riding his scooter. When he was diagnosed with IBD, his normal life seemed to come to an abrupt halt – now full of hospital trips and doctor visits. But Hayden is a fighter. Despite the setbacks that come with a diagnosis of IBD, Hayden hasn't let it stop him doing the things he loves. He continues to play lacrosse and basketball... and try out daring skateboard maneuvers! Read Hayden's full story, as told by his mother Heather. read more Healthcare Reform Want to know how the Patient Protection and Affordable Care Act can help you? Following the passage of this law, the government has created a "Health Insurance Marketplace" to help people learn about their insurance options, find an appropriate plan and submit an application. Open enrollment began on October 1, 2013 and lasts through March 31, 2014. For more information about the Marketplace or to apply for coverage, visit read more UC Success Video Contest UC Success Living with ulcerative colitis can feel like every day presents a new challenge to overcome. But the good news is... there are many people with UC who have found ways to succeed, despite the difficulties of their disease. The UC Success Video Contest is a great opportunity to share with others how you've learned to overcome the challenges of UC. Now's your chance to celebrate your accomplishments and inspire others to reach for success too! Learn more about the contest and how to enter. read more Team Challenge Race in Miami in February Team Challenge is taking on Miami! On February 2, 2014, 25,000 runners and walkers will convene in sunny Miami for the Miami Marathon and Half Marathon... and you can be one of them! Take a break from winter weather and join Team Challenge in South Florida, where you'll run on a breathtaking tropical course. Don't miss this incredible opportunity to challenge yourself and support treatments and cures for Crohn's and ulcerative colitis. To register with the team, visit

No comments:

Post a Comment