The Life Raft Group (LRG) started in 2000, when a handful of patients in the early Gleevec trials began sharing their experiences online about this rare disease and the side effects of this new drug. In subsequent years, the Life Raft Group has grown enormously.
Their goal? Quite simply, to cure gastrointestinal stromal tumors (GIST) and helping people who have this disease. GIST cancer research provides a perfect model for demonstrating how to cure other cancers. GIST, although quite deadly, is a relatively simple cancer and has an increasingly understood mechanism of cancer mutations. Further, there is a growing list of targeted drugs to address these mutations.
Why I write about this in my blog? For a number of reasons. Firstly, because as a GIST’er you can register your patient data. So these data can be used in the search for a drug and / or to help other patients. Which I already had read somewhere, and to be frankly had forgotten, but which I’ve done now.
Second, since you can donate your (removed) tumors tissue to the GIST Collaborative Tissue Bank. Due to the rarity of GIST, one of the most urgent research needs is for tissue samples. The GIST Collaborative Tissue Bank brings together GIST researchers and GIST patients in a unique partnership. For patients, it’s an opportunity to reach the world’s leading GIST research scientists with one tissue donation, maximizing both tissue and precious research time. For researchers, it’s an opportunity to access tissue linked to GIST clinical histories and to share valuable tissue and critical data.
A third reason is because the Life Raft Group has a very accessible website (liferaftgroup.org) with al lot of (English) information. And in connection therewith I had recently an idea where this Life Raft Group (LRG) and the Dutch Contact Group GIST may also come into play. However, this idea is still at an early stage, so maybe you shall hear more about it at a later moment.
The final reason is simply the name. Life Raft, or lifeboat. For someone who spent much of his professional life dealing with the safety of swimming pools and swimmers, a name that is obviously very recognizable. And immediately creates all kinds of positive associations.
But also because a lifeboat is one of the most recognizable features of the island of Ameland, where my ancestors walked around for several hundred years. In this case a horse lifeboat which was used in the past, whereby it with the help of volunteers and 10 great horses thundering across the beach it was pulled from the surf into the sea.
Nowadays a tourist demonstration (take fot this a 10 minute break), because present-day at an emergency, a modern lifeboat leaves from the port of Ameland. But even such a demonstration gives you goose bumps and you will never forget those images and sounds.
In short, a lifeboat, rescuing people and assisting those who are in need, has also a very long history for me.