GIST Support InternationalGIST Support International

Nearly 600 members in 25 countries Patients and caregivers Family and friends Physicians, nurses, researchers All focused on GIST….

People helping each other

“Sharing compassion and knowledge: pathways to hope…”

Mission and PhilosophyMission and Philosophy

Support – from shock of diagnosis to “informed patient”– sharing experiences, stages of understanding

Education– explaining facts, new findings– steering patients to treatment by sarcoma experts

Empowering patients to seek the best care Open access Open communication Volunteers only: no paid personnel

GSI’s ServicesGSI’s Services 2 listservs hosted by Lsoft

– GIST list (almost 600 members)– Grief and loss list (anticipatory & bereavement)

Phone pals Website www.gistsupport.org

– Scientific summaries with references– Medical literature updates every few days – Topical Q&A contributions by experts on issues– Savvy Patient: navigating GIST treatment– Psycho-oncology Place: essays, stories– Photo Gallery: members, tumors, and experts– Bulletin board forum

GSI is a growing communityGSI is a growing community

Since 2003 grown to largest GIST group Website has >300 visitors daily (10/2005) Achieved NPO status in 2005

– Allows interactions with pharma, associations– Grant from Pfizer to improve our website– Grant from Novartis to help sponsor PBS

television documentary on targeted therapy– Plan for language translations on website

What’s next for GSI?What’s next for GSI?

We will ask for your opinions to share globally in more Q&A write-ups on our improved website.

We will ask research questions… We will promote clinical trials… We will summarize research for patients and

educate them in treatment options. We will support research fundraising via GIST

Cancer Research Fund (www.gistinfo.org).

. . . . Dad was sothankful for all theinformation youshared with meand all the facts Ireceived fromreading all of youre-mails. . . . My . ..family wanted tomake sure I wroteto you letting youknow that dad lostthe battle but weare going to keepup the fight in hismemory and saythank you for beingsuch special caringpeople. Youhelped our familythrough a verydifficult time and Iwill never be ableto say thank youenough.

Thank you again,and may GodBless each of you.

~ M in CA

I am constantlyamazed at thenumber of peoplewho are willing tooffer the benefits oftheir fears, help,and support to helpother cope. Thebest thing that canhappen to anyoneis to join the GISTSupport group. Ican attest to thisfrom personalexperience.

I concur with B: You guys all ROCK!!Finding you has been the biggestblessing for my Mom and for me--you've enabled me to find and learnthe facts to relay to her. . . . . It's anemotional roller coaster on heresome days, isn't it? That must bebecause it is so real and soimportant what is discussed here. ~ MK

I helped my Mother 12 years agoand then my aunt 7 years ago diefrom cancer. I held their hand whilethey took their last breath. Iwatched their bodies deteriorate. Iam so afraid. There I said it. I amso afraid. I have given myselfpermission to feel and for that Ithank you all for putting my feelinginto words. This allowed me theopportunity to connect with myfeelings and it is a necessary step.Thank you again for the help. Youare an amazing group of people!My best to you all

Thanks for all your help. I tellG everyday what I learn here[at GSI]. He laughs like I am alittle crazy, but as soon as hehas something weirdhappens.... he tells me to goemail my friends a question.Thanks ~ L, G, & our children

You have empoweredme to ask the toughquestions. When Iam facing the drs, thewords I have read hereecho in my head and Iknow that I have myown army of fellow GISTwarriors standing besideme. Your stories inspireme and encourage meto keep on fighting thefight. I amcontinually amazed thatin the midst of your ownstruggles you take thetime to share with theboard so that othersmay learn, laugh, rejoiceandcry with you.Fighting With You! ~ VK

Sharing Compassion and Knowledge: Pathways to HopeSharing Compassion and Knowledge: Pathways to Hope

My family is verysupportive and I lovethem all very muchbut they don't knowwhat its like eventhough they try sohard too. I am so gladI found this supportline so I can talk tosomeone when I needto and offer my helpwhen needed.Hang in there. Thereare more of us outhere! ~ F

And how the GSI subscribers feel . . .

in this group, people do care about eachother. Our common fight for our life or forthe life of those we love has created alink that is difficult to explain and hard tobreak... I view it like an invisible chainjoining us in good or in bad. The successof one person becomes the success of alland the defeat of another throws shadowand pain in all.Borders simply do not exist and I havenever felt being a stranger here. Lots ofgood wishes to you. ~ AN in Italy --mother of CL

I feel so grateful to all of the individuals who write about their experiences, both good and bad. I cry when I read many and smile when Iread others and say thank you to God that there are so many wonderful, intelligent, caring people out there who are able to share thewealth of both their pain and joy. I thank you for everything that you and everyone else share on this network. I would never have knownabout the experienced people at Dana Farber. I feel like someone else cares about me because of this wonderful support group. ~ SR