I was a piano teacher and performing pianist for the past 13 years but stopped work completely this year so I could spend more time with Andrew and see to his needs. We were so lost in the beginning because we did not know what to expect, due to the relative rarity of GISTs.
The National Organization for Rare Disorders (NORD) held a Rare Disease Summit in Washington, D.C. October 20019, hosting several thousand people comprised of patients, advocates, non-profit employees, health providers, IT developers, pharmaceutical staff, physicians and researchers, and representatives from government entities.
The 16th annual Night to Fight Cancer (NTFC) took place on October 24th, 2019 at the Midtown Loft and Terrace in New York City. This annual event benefits The Life Raft Group’s research programs.
Pete Knox represents The Life Raft Group and GIST patients at ISPOR’s 2019 European Conference, held November 2nd-6th in Copenhagen, Denmark.
The holiday season is quickly approaching and the stress of the holidays can bring up mixed feelings for many people. When you are struggling with a cancer diagnosis such as GIST, the holidays can be an extra-challenging time of year.
GIST Survivor is a private group and only members can see who is in the group and what is posted. The group is for GIST survivors who are searching for a cure and living well along the way. Currently 1,235 people are members of the group and this number is increasing daily.
When diagnosed with any disease, it's important to see a specialist who will have the proper experience to guide you to an effective treatment protocol. This LRG survey queried LRG members about physicians, the physician's ability to answer their questions, and who recommended their GIST specialist in order to get a snapshot of patients' satisfaction with their with their care.
The Life Raft Group is pleased to announce the official establishment of our Regional Patient Registry, a partnership with Latin America, which will collect medical history and treatment information from more than 600 GIST patients who are represented by Fundación GIST Mexico, Fundación GIST Chile, and Pontificia Universidad Católica de Chile.
Wendy Williams became a member of The Life Raft Group in August of 2017. She was introduced to the LRG by one of her closest friends, Michelle MacLea, whose son Connor was diagnosed with SDH-deficient GIST in 2017.
Breaking news in Targeted Oncology online today - A New Drug Application (NDA) for Ripretinib (DCC-2618) was submitted to FDA for treatment of GIST, by Deciphera.
