Coverage of GIST Awareness Day continues with this press release that calls attention to our awareness campaign and our support for the global GIST community.

Official Press Release:

WHIPPANY, N.J. and WAYNE, N.J., July 9, 2014 /PRNewswire/ — To raise awareness about gastrointestinal stromal tumors (GIST), the Life Raft Group, a leading GIST advocacy organization, designates Sunday, July 13, 2014 as worldwide GIST Awareness Day, through a presenting sponsorship from Bayer HealthCare. At the center of the awareness activities is a global challenge to break the world record for the largest display of origami boats, a creative and engaging way to show GIST patients and caregivers that they are not alone – others are in the same boat. The Life Raft Group invites everyone to visit www.gistawarenessday.org to play a part.

“By encouraging people around the world to participate in the origami challenge, we hope to show an incredible outpouring of global support for people with GIST – a rare type of cancer,” said Norman Scherzer, Executive Director of the Life Raft Group. “The more awareness we can create for GIST, the more programs and research we can provide and the closer we can get to a cure for this often misdiagnosed disease.”

The Life Raft Group selected July 13 as the date for GIST Awareness Day for two meaningful reasons. First, July is National Sarcoma Awareness Month and GIST is the most common form of sarcoma involving the gastrointestinal tract.1 Second, up to 5,000 people in the United States are diagnosed with GIST every year – that’s about 13 people diagnosed with GIST each day.2

“About three years ago I was diagnosed with GIST after noticing an odd lump in my abdomen. At first I thought nothing of it. I was young and feeling healthy, but a loved one insisted I go get checked. I’m glad I did,” said comedienne and actress Maureen “Mo” Collins. “For people just like me who have been diagnosed with GIST, I encourage them to stay positive, this has helped me greatly.”

“As part of our ongoing commitment to the GIST community, Bayer proudly supports the great work the Life Raft Group is doing for patients and caregivers,” said Joseph Germino, M.D., Vice President of Medical Affairs, Oncology, Bayer HealthCare. “Through GIST Awareness Day, we hope to highlight the need for continued advances in GIST, one of many hard-to-treat cancers.”

Getting Involved: How the Public Can Help On Sunday, July 13, the Life Raft Group and Bayer will host GIST Awareness Day events in cities across the country to help build a stronger local voice for the GIST community. The events promise an afternoon of fun activities for the whole family while raising awareness about GIST. International GIST groups will also hold mini-events to create worldwide GIST solidarity. To find more information about the events, visit www.gistawarenessday.org or follow the Life Raft Group on Facebook , Twitter ,Google+ , LinkedIn or view the Life Raft Group’s videos on YouTube .

GIST Awareness Day is an extension of the Life Raft Group’s Rare 13 education campaign. As part of the awareness initiative, the Life Raft Group has developed 13 Promises for GIST, an advocacy effort to help expand patient support and advance research and treatment options. In July, the Life Raft Group plans to raise these promises to policymakers in the nation’s capital.

The 13 Promises to the GIST Community

  1. Fund GIST research

  2. Fund sarcoma research

  3. Secure a unique GIST reimbursement code

  4. Encourage compassionate use programs

  5. Ensure public payer coverage for medications

  6. Expand clinical trial enrollment

  7. Encourage speedy regulation processes

  8. Fund healthcare professionals education on sarcomas

  9. Ensure adequate sick leave policies 

  10. Enhance social services for sarcoma patients and families

  11. Protect patient job security

  12. Ensure paid sick leave for caregivers

  13. Incentivize for continued innovation

Visit our press page for more news coverage for GIST Awareness Day.

LRG Team
Author: LRG Team