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LIFE RAFT GROUP INC

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Nonprofit Overview

Causes: Digestive Diseases & Disorders, Health

Mission: The Life Raft Group (LRG) is an organization that directs research to find a cure for a rare cancer and help those affected through support and advocacy until we do.

Results: We have succesfully held meetings and conferences, most notably, Life Fest, which is a bi-ennial weekend event that brings patients & caregivers together as well as doctors & pharmaceutical representatives. We have created numerous education materials, including pamphlets, brochures, webcasts and a monthly newsletter. We have also created and maintained a comprehensive and sophicated patient registry, which allows us to track and report on key issues with GIST, as well as a world-class research team with the best GIST researchers in the world. The Team has spent 4 years in search of the cure for GIST and has achieved successes on a broad number of fronts.

Target demographics: patients living with gastrointestinal stromal tumors (GIST) and their friends, family, caregivers & doctors.

Direct beneficiaries per year: Patients in over 150 countries.

Geographic areas served: Over 150 countries

Programs: Education -The LRG aims to empower and educate GIST patients and their caregivers through innovative programs such as our GIST Days of Learning (GDOL), our Expert Patient Training and our biennial Life Fest convention. We provide updated content through our website, Newsletter, and through our social media presence. Our participation in the Annual NIH Clinic helps bring together leading experts and patients with SDH-deficient GIST. We provide online lists of GIST experts and a Clinical Trials database to help expedite access to the best treatment. Research -The LRG has been on the front lines of collaborative research since our inception. Our current collaboration with Columbia University-New-York Presbyterian is but one example. We maintain the largest GIST Patient Registry in the world, and through our GIST Collaborative Tissue Bank are able to provide valuable data and tissue for researchers. Our innovative side effects management tool, SideEQ, provides information for patients and for research. Advocacy-Through one-on-one interactions with our patients and caregivers and by actively participating in advocacy organizations such as One Voice Against Cancer (OVAC) and NORD (National Organization for Rare Disorders), we help assure that GIST patients have a voice and can access effective treatment.

Community Stories

9 Stories from Volunteers, Donors & Supporters

Bill D.2

Client Served

Rating: 5

LifeRaft Group has been there every step of the way with me as I learn about this rare disease and explore my treatment options. They're an invaluable resource for patients navigating the confusing space and a critical source of information for caregivers.

Previous Stories

Client Served

Rating: 5

Being diagnosed with a rare cancer is hard. Finding out there is no treatment for that cancer is worse. Suffering from unrelenting, inexplicable side effects is enough to drive you insane.

Finding Life Raft Group made all the difference. Within hours of registering with them online, they helped me find a specialist who understood GIST and Carney Stratakis. They were politely insistent that my oncologist wasn't enough and consulting with an expert was the single most important thing I needed to do. They were right.

Since finding them, I'm still sick. I still fight nausea waves and pain. I'm still more fatigued than I want and still freezing cold all the time. But I'm never alone - and that's made all the difference.

People say it all the time, but I literally don't know what I would do without them.

Client Served

Rating: 5

Finding Life Raft helped me understand my diagnosis of GIST and led me to a world renowned expert in Sarcoma and GIST. I was on a sort of "fool's paradise" thinking that GIST was no big deal... through Life Raft I learned of the importance of mutational analysis, the importance of finding a GIST specialist, and targeted therapy. Recently, when a close family member was diagnosed with Sarcoma, I was able to help -with the knowledge I gained through Life Raft. This organization is not just a Life Raft for those of us adrift in a sea of misinformation but truly a life saver for many.

Clifford K.

General Member of the Public

Rating: 5

They provided detailed information about GIST cancer that helped get proper treatment.

Perry L.

Client Served

Rating: 5

Wonderful at education outreach, research coordination, and personal help with GIST-related issues, all nonprofits and advocacy groups should take a lesson fron the LRG!

Client Served

Rating: 5

being diagnosed with a rare form of cancer can really be a shock, I had never heard of GIST. without the resources provided by the Life Raft Group I would not have known anything about this disease or had any support moving forward. It truly is as the name implies - a life raft - for people floundering around looking for answers, support and comfort.

1 Alida N.

Client Served

Rating: 5

The Life Raft Group has been an invaluable resource for my family. My husband is the type of person that has only had 1 or 2 sick days his entire life so it was a sucker-punch to find out a recent tummy ache was something more serious. There is little valid information available online, most books are outdated or erroneous and obviously can't keep up with the latest discoveries (it seems to be changing weekly), even those with the GIST disease on social media get many "facts" really wrong. Our primary source has been Life Raft's social media site and their referenced research white papers - they're amazing. Even the doctor's are impressed how well informed we are with the latest studies and thoughts. A big thank you to this group!

Teena Morrow P.

Client Served

Rating: 5

I was diagnosed with GIST, had surgery to remove part of my stomach with the tumor and started on Gleevec in 2011. As this is a rare cancer, few people (professional and non professional) had much knowledge about the cancer, let alone about the treatment. The Life Raft Group has given me more information about my cancer than my oncologist ever did. They have always been available to answer my questions, to help me deal with my cancer and to just be there for me and my family. They have a conference every other year for us so we can keep up on the latest developments, information and so we can meet others who have the same cancer as I do. I have appreciated all the help, knowledge and understanding given by all of them. Without the Life Raft Group, many of us would probably not be here today. When a cure for GIST is found, I know it will be made possible because of the Life Raft Group. I am very proud to be on their team.

Client Served

Rating: 5

The Life Raft Group is indeed a life raft. The diagnosis of GIST is frightening and there is not a lot of information out there. The Life Raft Group is diligent about providing all kinds of resources to help navigate the journey. I am so thankful for all of their help!