Andrea Torres: A Story of Hope and Optimism
My name is Andrea Torres, and I am 24 years old. I am from Tegucigalpa, Honduras. I was diagnosed with GIST in December 2015 here in Honduras. I was 22 years old. It began [...]
2017 GIST Award Goes to Dr. Adrian Siefert
The GIST Group Switzerland, the support group for patients with gastrointestinal stromal tumor (GIST) has awarded its science prize for the eighth time. The 2017 GIST prize, worth CHF 10,000, was awarded to Dr. [...]
CTTI Meeting Promotes Innovation
Professor Dan Ariely The Clinical Trials Transformation Initiative (CTTI) held its quarterly Steering Committee meeting this past September in Washington DC, which focused largely on effective ways to increase adoption of clinical [...]
Howard Greenley: Pioneer GIST Warrior, Loving Husband, Father, and Grandfather
Howard Greenley, 59, of Houghton, MI, passed away in October 2017, following a very long and courageous battle against cancer. Born and raised in lower Michigan, Howard was a graduate of Holderness Prep School [...]
Social Media Helps Rescue Croatian Patient
Danijel Romic with his 2 children Danijel Romic, a 34-year old GIST patient from Crikvenica in Croatia, was faced with a challenge. Diagnosed with GIST in 2014, he did not have access [...]
NIH Clinic Combines Research, Knowledge, and Hope
I had the pleasure of attending the 15th Pediatric and Wildtype Clinic along with Becky Owens from GIST Support International as patient advocates. The Clinic was held at the National Institute of Health in [...]
In the beginning…Patient-reported outcomes
Patient-reported outcomes is a buzz-phase that we hear a lot these days. At the Life Raft Group, I was recently in a meeting where we were discussing patient-reported outcomes, the LRG registry and patient-powered [...]
Dana Pearson – “Until We Meet Again”
We lost a great light in the Life Raft Group with the passing of Dana Pearson back in June. Dana touched the lives of others in a profound way, always smiling, always reaching for life-affirming [...]
LRG attends Partnering for Cures in Boston
I recently traveled to Boston, Massachusetts to attend Partnering for Cures. This is a meeting sponsored by Faster Cures that brings together patient advocates, scientists, policy-makers, and other leading members in the industry who [...]
In Loving Memory of Beverley Lynn Burrows
Life Raft Group Canada is mourning the loss of our dearly loved Vice-President, Lynn Burrows. Lynn was always a light-hearted and optimistic woman, in spite of her decade of struggle with GIST. Her smile could [...]