Outreach & Engagement Update – September
This is the monthly update for the LRG Outreach & Engagement Department, detailing events for October and volunteer positions available.
Genetic Testing Cost Effective for Newly Diagnosed GIST
UC San Diego Health released a post today titled, "Genetic Testing Cost Effective for Newly Diagnosed GIST" discussing a new paper published in JAMA Network Open by Moores Cancer Center's Dr. Jason Sicklick and colleagues which covered genetic testing for GIST patients.
The Life Raft Group Announces Collaboration with OHSU on GIST Tissue Bank
In this issue of LRG Science, we release breaking news of our newest collaboration - with OHSU on the GIST Collaborative Tissue Bank. The LRG has a unique patient registry with over 2,000 members and this collaboration is an important example of the vital role patient advocacy groups and academic institutions play in bridging the gap between researchers and motivated patient populations who want to share their clinical histories and tissue to create new treatments and better outcomes.
Trent and Rosenberg of Sylvester Cancer Co-author Sarcoma Book with Other Experts in the Field
Dr. Jonathan Trent, GIST Specialist at Sylvester Cancer Center and Dr. Andrew Rosenberg, also a GIST Specialist at Sylvester, have co-authored a book dedicated to sarcoma diagnosis and management with other sarcoma experts specifically for the purpose of giving oncologists a credible authority to 'go-to' for sarcoma knowledge.
GIST Knows No Boundaries
On September 17, 2020, the Life Raft Group invited Dr. David Josephy, President of GIST Sarcoma Life Raft Group Canada, to present his highly acclaimed GIST 101: GIST Biology, Genetics and Pathology - an overview of the biology, genetics and pathology of GIST - for the members of Henzo Kenya, a patient advocacy group for GIST and CML patients in Kenya, Africa.
“LEY DE CÁNCER CLAUDIO MORA”
On Wednesday, August 26, 2020, LRG Global Consultant & Executive Director of Fundación GIST Chile, Piga Fernández, (GIST survivor & advocate), attended ae climatic event at Palacio de La Moneda (La Moneda), where the President Piñera of Chile took the final steps to sign the 'Ley de Cáncer Claudio Mora' guaranteeing healthcare protections for Chilean cancer patients.
Caregiver of the Month for September: Pat Rocco
Each member has a unique story, but all reflect the intrinsic courage of one facing the challenge of GIST. Pat Rocco shares her story.
New Horizons GIST 2020
The New Horizons GIST 2020 Virtual Meeting kicked off on Thursday September 10th at 8am EST. Meeting since 2003, these patient advocates for various cancers split off to a GIST-only meeting several years ago. This year’s meeting, originally planned for Berlin, Germany, was held virtually September 10-12th.
LRG Hosts Virtual Meeting for Global GIST Advocates
On Friday, August 21, The Life Raft Group hosted a virtual meeting entitled “GIST Patient Advocacy during the 'New Normal' of the COVID 19 Pandemic.” Designed for representatives from global GIST advocacy organizations, its purpose was to provide a forum for the international community to discuss challenges they are facing, and to share experiences and best practices.
Virtual Life Fest 2020: SDH Panel Summary
Over fifty participants attended a virtual meeting of SDH Experts in honor of GIST Awareness Day, July 13th, during Virtual Life Fest 2020. Questions were presented to the panel which included One of the first questions asked was “what specifically are your most challenging research hurdles and how can we, as patients and patient advocates from around the world help move research forward?”