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February 2012

2011 Executive Director's Report

The Life Raft Group is coming up on our ten year anniversary. The truth is, we’ve been around longer than that, since 2000 and the early days of Gleevec, when we were just a handful of patients and caregivers trying to make sense of this strange, new world and help each other as best we could.

But in 2002, the LRG made a conscious decision to become a formal organization and help not just other each other, but every GIST patient we could find. We started out with a simple goal, to ensure no one would ever face GIST alone. We were focused on survival and educating people about Gleevec and newer drugs coming down the pipeline. Everything was new and scary and we had so much to say and do.

As the years have passed our goals have evolved, we climbed out of the back seat and took the wheel by launching a major research initiative to find the cure for GIST; we grew our education and support by rolling out websites, bigger and better newsletters, educational videos, a clinical trials database…I could go on.

We’re bigger, our goals are bigger, our community is bigger. But we’ve never forgotten where we began; we are increasing our reach to ensure that amongst everything else—no one faces GIST alone.

And we are still as dedicated as ever to survival. We have just chosen to imagine a future without GIST—without cancer.

Maybe that’s why it’s so hard to write these reports, because I would rather be looking ahead, not behind. But as I said before and must always remind myself, where you’re going depends a whole lot on where you’ve been.

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Advocacy

One of the many things the LRG expanded in 2011 was our advocacy efforts. From the early days of helping patients with access issues on a one-onone basis and reporting on trends we saw in dosage and survival, the LRG has now become an active presence in making change. We still helped patient’s access drugs; we just did it more often and in some cases, in new ways.

Alianza GIST, our Latin American patient group alliance, met (as a formal organization ) for the first time in Brazil and committed itself to helping patients in this region become better informed about the disease and its treatments as well as get better access to life-saving drugs.

We put this into effect by creating the first event for “Best Practices in Latin America”, which we held in collaboration with the Max Foundation at the American Society of Clinical Oncology (ASCO) conference in June and brought American & Latin American physicians together with others to study abnormal GIST cases in the region.

We also took a stand on counterfeit and substandard treatment, which plagues much of the world, but especially Latin America, by creating a petition and asking the community to stand with us.

Another goal that we have had for years is the routinizing of mutational and plasma testing. In 2011, we took this further than we ever have by first reestablishing free plasma testing through TDM Pharmaceutical Research, when Novartis was no longer able to support the program. Second, we launched a major survey, targeting both patients and doctors, which aimed to find the root causes for lack of participation in these tests and how we can make it better.

Patient Support & Education

I’m constantly amazed at how much our support & education efforts have grown. The ever-changing technological world we find ourselves in continues to come up with new and innovative ways to reach people.

While laying the groundwork for new technology, like a fresh, more interactive website and mobile apps, the LRG reached further and further out. Though we wish there were no need for it, we increased our patient crisis counseling efforts and plan to make these better in the new year.

We also not only expanded our US local groups, but we began efforts to keep our local group leaders more engaged and well-informed in order to increase the benefit from those meetings.

In a similar vein, we created a formal Physician Outreach program, with a goal to reach more patients, especially those who might not be able to find us on the internet, through their doctors.

Additionally, after the tragic loss of LRG member, Bill Buchanan, the LRG was able to honor his last wishes and establish a local support group at John Stroger Hospital a county hospital in Cook County, Illinois, where patients sometimes don’t have access to the internet to learn more about their disease and often have trouble even getting to appointments.

We also reached more patients by getting out of New Jersey! This year, the LRG had its first professional booth at ASCO in Chicago, where we raised awareness about GIST and the Life Raft Group by connecting with oncologists, pharmaceutical representatives and other patient groups from all over the world.

Moreover, we made a fairly simple, but nonetheless brilliant, decision to hire long-time LRG member and very vocal email poster, Janeen Ryan on a part-time basis.

Bringing Janeen on board has helped us support, assist and comfort more patients. We began as a handful of friends trying to help each other and with Janeen and the rest of the committed staff’s help, as large as we become, we will still always feel that way.

This year we saw a new member, Dave Safford, join the LRG and throw himself into supporting the cause by joining the Board and hosting a fantastic piano concert. Long-time member and Pediatric GIST survivor, Jason DeLorenzo, who has always struggled with GIST complications, ran an entire marathon this year to support GIST research.

New or just arrived, I consider every GIST survivor my friend and I am immensely proud of all they have achieved.

Research

In 2011, the LRG made several strides in the search for a cure.

We sustained our support and participation in endeavors like the NIH Pediatric & Wildtype GIST Clinic which continues to make discoveries in the understanding of this rare subset of GIST.

We were honored to present a poster and a paper on the relationship between Gleevec dosage and long-term survival at the prestigious Connective Tissue Oncology Society (CTOS) conference in November. We’ve come a long way from a small group of dedicated patients looking for trends in treatments and practices.

This year, we also saw the first progress report of our D-Day initiative. This research project was the result of years of knowledge building, and bringing together the best in their fields to consider and plan every next step. As I’ve said before, a perfect storm created this effort. The funding arrived just as costs for vital tests lowered and the research team had gained enough knowledge and resources to make a strong push for the cure.

I for one was terribly excited to see what they came up with and the results were better than I expected.

Our team identified several new mutations besides KIT in its Sequencing group; an important gene-critical for GIST cell survival- was identified by the Gene Knock- Down group, as well as more relevant targets and resistance factors; our Drug Screening group, which was created to fast-track effective treatments for patients in need while the lengthier process of finding the cure is underway, found several drugs which could potentially inhibit GIST growth. All of these discoveries are now being vetted by our Validation group and very soon I hope to have even more progress to report.

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Perhaps, it is more than preferring to look forward. Perhaps the brighter the future looks, the harder it is to look back.

When we do, we are reminded of how far we still need to go. We lost friends this year- people like Richard Palmer, Dan Cunningham, Rachel Tate and Butch Eller- who supported us as we supported them. It’s easy to let these heartbreaks discourage you and rob you of hope.

But in those moments, all I need do is look around at Anita Getler, who is celebrating her six-year cancerversary this month; Tim Mansfield, who has passed 17 years, Floyd Pothoven, Marina Symcox, Tania Stutman and Paula Vettel— Anita, my wife of 50 years, 18 of which have been spent living with GIST.

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