Our theme for 2023 is Thriving Together and we are going to illustrate that concept throughout the year by sharing the celebrations, triumphs, and milestones that our community is experiencing while living with GIST. See more exciting highlights from #thrivingtogether.
Linda Geiss, Alabama, USA, and her son, Allen
In the summer of 2019, my son, Allen went to the emergency room because he was not feeling like everything was right and tests showed that he was extremely anemic and had low blood sugar. An ER visit turned into a hospitalization and a GIST diagnosis for him. Between the diagnosis, prayer, and immediate surgery – The Life Raft Group was discovered by an internet search. Thankfully, the recommended surgeon was on the LRG GIST specialist list. Valuable information from the LRG site provided the knowledge to ask the right questions like their mutational testing information. Allen’s GIST mutational testing was done at the time of diagnosis but was requested by us. Allen is KIT Exon 11. Praise the Lord, since surgery and Gleevec, Allen is NED (no evidence of disease)!
The LRG connected us with a GIST specialist (oncologist and surgeon) and offered a mentor. A computer-generated program couldn’t have provided a better match than caregiver mentor and friend Marlene Nei who was very encouraging when she first called me. Since then, we have built a great friendship and she means a lot to me. Prior to retiring, my career and business was focused around networking. I am a people-person and love to connect with others and believe in sharing support. I have since become an LRG GIST Mentor so that I can give back to the community that was there for me when I first embarked on this journey with my son.
Coping With a Loved One’s GIST Diagnosis
With our Christian faith, family and friends who are our solid rock foundation. The Life Raft Group also provides important educational opportunities, empowerment, support, and worldwide GIST connections.
Advice for Fellow GIST Caregivers
Tap into the amazing resources of The Life Raft Group. You don’t have to travel this GIST journey alone. Get involved. Jump on the life raft with us!
Hobbies We Enjoy
Family time together, travel, exploring new entertainment and food venues…often with a special spin for my grandson!
“For I know the plans I have for you” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11-13 and “Do not be anxious about anything, but in every situation by prayer and petition, with thanksgiving, present your request to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6-7.
Each member story reflects the individual patient’s experience. GIST is not one disease, but a family of diseases and each patient has a unique set of symptoms and manifestation of the disease.
If you want to be our LRG Patient of the Month or Caregiver of the Month, please see the criteria below.
Criteria for Patient of the Month
- Patient must be a member of the LRG GIST Patient Registry
- Patient is an active member of the Patient Registry, continually providing medical updates
- Patient’s record should be at least 80% up-to-date
- Patient has GIST Patient Registry Online
- Patient must agree to provide consent to share his/her story to our GIST community on our website and social media
Criteria for Caregiver of the Month
Caregivers are an important team of family and friends. They allow a patient to depend on them for support through their difficult journey as well as help with various tasks such as cooking, housekeeping, transportation and so much more. In conjunction with Life Raft Group’s Patient of the Month, we are showcasing Caregivers of the Month. We want to hear stories of the selfless supporters that stand beside our GIST warriors.
Interested? Contact Sahibjeet Parmar, Director of Data Mgmt. & Research, for more information: firstname.lastname@example.org
SUPPORT THE LRG & GIST RESEARCH BY DONATING TO OUR SPRING CAMPAIGN