GIST kids logoDuring the Life Raft Group Life Fest 2014, a panel of young GIST patients and family members gathered around a table to discuss ideas for advocating for SDH-deficient and wild type GIST. The group agreed that representation of SDH-deficient and wild type GIST was lacking and thus research and treatment options suffered. To help to resolve this, was started. Declaring the start of a branch-off organization powered by the Life Raft Group was just the tip of the iceberg. Questions began to form. How would we reach the younger patients and families? How would we educate and advocate to such a dynamic group of people? How would we draw attention to something that is very rare? Finally, how would we find funding for our ideas and research goals?

I have to admit, I didn’t know what to expect from a handful of young adults and children. I am happy to share that their ideas were phenomenal and inspiring. We first addressed the advocacy issues, and all of us agreed that we needed a website devoted to SDH-deficient and wild type GIST. However, with a younger population of members, it could not be a website filled with text spouting statistics of GIST. To help the younger audience understand GIST, information via video clips will help cut back on reading material, yet deliver important educational information in an innovative way.

We also agreed that to maintain web traffic, there needed to be more than just GIST-related articles. The younger patients especially didn’t want a site that constantly reminded them about cancer. They want to spread hope, celebrate life, and show that there is life outside the diagnosis, so the GISTKids Stage developed. This page on the website will be blog-like, highlighting GISTKids members who want to send in and share samples of their passions – whether it is in the form of writing, art, music, sports, or other achievements. The stories will be shared to inspire others to get out there and live life to the fullest.

The panel also discussed that the website needed to provide a place for the GIST community to grow. Some ideas under development are:

Virtual Map – where members can pin their location as a visual aid to show GIST patients that they are not alone
GISTKids Forum – where questions, answers, and conversations can flow
Events Page – a page designed to highlight events and fundraisers
Social Media – outreach through all social media sites will be utilized
One of the more exciting ideas that the group produced is the use of mobile and web-based games as a way to draw in traffic of all ages to the site. It even has the potential to pull in the population outside of GIST while advocating, and perhaps even fundraising for GIST at the same time. The first game under development is called GIST Keep Swimming. It features the GISTKids logo in a simple one-touch/click game that navigates the GIST fish underwater dodging obstacles and gathering coins. We agreed that a friendly little competition combined with video clips or ads highlighting our GISTKids members between rounds were great ways to spread the word on GIST. Future ideas are to create games that use in-app purchases that double as direct donations to the organization, which may help fund some of our goals.

Last, but certainly not least, is the need for funding. Research is minimal on SDH-deficient and wild type GIST, and lack of funding is part of the reason. In order to increase treatment options as well as awareness we will need funding. A page devoted to ideas on how to raise funds will be created to help guide GISTKids members. Every dollar donated will help make a difference.

As you can see, our youngest GIST members are big dreamers and these ambitious plans reflect only a portion of the ideas that came from our Life Fest 2014 meet up. I want to bring forth a branch of the Life Raft Group organization that represents the spirit of our young members, but I can’t do it alone. If you, or anyone you know, want to volunteer and be part of this amazing adventure, please send an email to with the subject of GISTKids Volunteer. If, by chance, our work has inspired a donation, all donations can be made out to The Life Raft Group – earmarked GISTKids. Together we are not as rare as they make us to be, and together we will help make a difference for all.