In the few months since we began The Hope for Gus Foundation, due primarily to the generosity of our friends, family and community, we raised $11,000....We knew full well that every dollar mattered, first for our son, but also for our foundation. This was our first big disbursement, so we wanted to do it right.
As the six of you who read this blog know, we have had some experience with the medical community through cancer in the past few years. Unfortunately, that experience left a few things to be desired in terms of bedside manner and the development of new therapies.
I'll never forget sitting in the oncologist's office as he described the treatment my wife would go through after being diagnosed with breast cancer...it would be chemo, radiation and a whole bunch of prayin'. My dad died of cancer in 1971...guess what his treatment was? I'll give you a clue - a whole bunch of prayin' was involved. That's right, it was chemo and radiation. I asked the oncologist at the time what had changed after all the thousands of miles for a cure were walked and all the t-shirts and little pink ribbon pins were sold. He told me they'd gotten better at diagnosis - well thank you SOOOO much - now we know a little sooner that we have life-threatening diseases!
The weird thing is that the whole cancer medical community acted as if they were placed on this earth by God himself to save us all. Everyone from the first oncologist Tonya met, to the social worker (who informed me that I needed to be more "in the moment" while my wife was in surgery for her mastectomies), was astoundingly pompous. It was very clear that we were the victims and they were our saviors. I'll stop here because this is bound to end with me swearing, and I want this to be a family blog. Suffice to say, I was worried as Tonya finished her cancer treatment and we turned around to approach the DMD community for Gus that we would be facing much of the same. I knew this time around, with my patience a little slimmed down, that I wouldn't be as docile as I was the first time...but, guess what??? I WAS WRONG!
We found another side of the medical community - one that is a bit humbled by the fact that this disease was identified 149 years ago (1861, when Sigmund Freud was 5...just to give you a mile post) and the prognosis hasn't changed significantly. Suddenly, the docs seemed to be in it with us...like we were all victims of this disease. And suddenly,we, and Gus, weren't alone.
With every boy who is diagnosed, we all know that the window of opportunity is small. You're lucky if you get 10 years from diagnosis to wheelchair. Just ten years - and it's relentless and predictable - 100% fatal. One doctor told me that it was one of the most predictable diseases we know.
BUT, doctors and researchers are saying that we are within ten years of having a cure. Unlike the cancer people, who seem to be wallowing in the money, but not doing a heck of a lot, there is ACTIVE research in both treatments and a cure for DMD but not a lot of spare change. And there, my friends, is the rub. In 10 years there may be a cure BUT in 10 years, if no effective treatments come on line, another generation of boys will be non-ambulatory and in wheelchairs. Every day and every dollar counts.
As a foundation, we decided that both lines of research, research for a cure and research for better treatment were equally important. Practically speaking, that means we will literally divide each disbursement in half - half to research for a cure, half to research for treatments.
I was told by one clinician that one phase of a trial typically costs about $2,000,000. As we contemplated where we should send our $11,000, I expected that such a paltry amount of cash might not create ripples. And yet, I contacted one pharmaceutical firm in Boston and the chief scientific officer sent me his cell number and asked me to call him. I e-mailed one of the top researchers in the US and he responded in a day saying he was at a conference, but could we talk in a couple of days? Gus' doctor, Brian Tseng, also a prominent researcher, sat with us for 45 minutes to discuss how we might proceed. I know what you're thinking: All of these folks were on the make - $11,000 is money, and they need it. That's the most delightful thing of all. Everyone of them explained what they were doing, talked about other research and encouraged us to think hard about where we would send the money.
In the end, we sent half of our money to Dr. Jeff Chmerlain, a researcher who wants to go to trial with a gene-therapy cure. Here's a link to Dr. Chamberlain's research. We sent the other half to Dr. Brian Tseng, whose research centers on effective treatments. Here's a link to Dr. Tseng's research.
As we continue to discuss and form partnerships with researchers, we know that we're all on the same team. Our goal is to raise $40,000 more this year - $50,000 in our first year. We will give 100% of that away. Due to the fact that we are a 501(c)3 public charity, every dollar given to us is tax-deductible. Thanks for being on the team with us. Know that every dollar and every day really matters - I'm reminded of that each morning when Gus looks at me with his big blue eyes and I know they deserve to see a bright future!
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