Coping With Grief and Loss
The loss of a loved one leaves a hole in our lives that cannot be filled. Each individual deals with his or her own grief process in their own way, but all of us share [...]
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 [...]
La Jolla Provided a Beautiful Backdrop for Our Three-Day July Event
The Life Raft Group and UCSD hosted a three-day event at University of California, San Diego UCSD-Moores Cancer Center from July 13th through July 15th. A GIST Awareness Day (GAD) event took place on July [...]
15th Pediatric and Wildtype Clinic Provides Support and Education
The 15th Pediatric and Wildtype GIST Clinic was recently held at the National Institute of Health in Bethesda, Maryland on July 5 - 7, 2017. The Clinic is a collaborative effort between clinicians and [...]