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!
Tuesday, July 20, 2010
Friday, July 9, 2010
The Kindness of Strangers...
Our first big fundraiser was put on by our dear friends Steve and Marcey in Greenwich Village, NYC. We were at Sullivan Hall and a band called Hot Lava was kind enough to donate a performance...then they were even kinder by letting me (Steve) go on stage with them to play harmonica on "The Weight." While I was up there, I took the opportunity to explain what Duchenne Muscular Dystrophy is and to thank people.
After the song, a friend was leaving so I stepped out onto the street to say goodbye. About a minute after I came back in, I felt a very large hand on my shoulder. I turned around and looked up, and up again at a man who may have been twice my size...the bouncer. My first thought: "Oh man, I didn't get my hand stamped and now this guy is going to throw me out on my ear..."
He smiled, "You were just on stage, right?"
"Yeah, that was me..."
"So it's your son who is sick?"
"He was just diagnosed..."
"I just want to tell you how much respect I have for you and how much I hope you guys are successful in finding a cure. I don't know what I'd do if I was in your shoes..."
For some reason, that little spark of kindness moved me as much as anything else that evening. Maybe it was because it was entirely unexpected.
We have had a few such moments of kindness - all very brief and all very wonderful. We have a heroes page on our website (www.hopeforgus.com). Those are people like Steve and Marcey or Hot Lava - they are heroes because they went far out of their way to help us raise money to help our son and thousands like him who have DMD. But these little flashes of kindness are just that...glimmers of light that briefly brighten our lives.
Soon after our first press release, a letter arrived in the mail. It was written by a woman who had two brothers who died from DMD, "I just read the article about your beautiful son, Gus," she wrote, "I am unsure what makes me write other than to encourage you in your endeavor...My brothers were a gift to this world..."
A little later, we received another letter from the mother of a former student of mine, "I wish you and Tonya well," she wrote, "I wish for Gus good health and a bright future...please know that your efforts will be appreciated by countless others..."
Then there are the donations...everything from $25 to $250. Some are from people we know, and some are from people we don't know at all. All are aimed at supporting Gus as we try to push forward for a cure.
As Tonya and I continue to try to accept the fact that we have a child who has been diagnosed with a terminal illness, the biggest challenge is not despairing at what the future might bring. Gus is an ebullient, beautiful child today. Those flashes of kindness that we've been blessed with since his diagnosis are small reminders that each day we are panning the river. If we look hard enough, we'll usually find gold.
After the song, a friend was leaving so I stepped out onto the street to say goodbye. About a minute after I came back in, I felt a very large hand on my shoulder. I turned around and looked up, and up again at a man who may have been twice my size...the bouncer. My first thought: "Oh man, I didn't get my hand stamped and now this guy is going to throw me out on my ear..."
He smiled, "You were just on stage, right?"
"Yeah, that was me..."
"So it's your son who is sick?"
"He was just diagnosed..."
"I just want to tell you how much respect I have for you and how much I hope you guys are successful in finding a cure. I don't know what I'd do if I was in your shoes..."
For some reason, that little spark of kindness moved me as much as anything else that evening. Maybe it was because it was entirely unexpected.
We have had a few such moments of kindness - all very brief and all very wonderful. We have a heroes page on our website (www.hopeforgus.com). Those are people like Steve and Marcey or Hot Lava - they are heroes because they went far out of their way to help us raise money to help our son and thousands like him who have DMD. But these little flashes of kindness are just that...glimmers of light that briefly brighten our lives.
Soon after our first press release, a letter arrived in the mail. It was written by a woman who had two brothers who died from DMD, "I just read the article about your beautiful son, Gus," she wrote, "I am unsure what makes me write other than to encourage you in your endeavor...My brothers were a gift to this world..."
A little later, we received another letter from the mother of a former student of mine, "I wish you and Tonya well," she wrote, "I wish for Gus good health and a bright future...please know that your efforts will be appreciated by countless others..."
Then there are the donations...everything from $25 to $250. Some are from people we know, and some are from people we don't know at all. All are aimed at supporting Gus as we try to push forward for a cure.
As Tonya and I continue to try to accept the fact that we have a child who has been diagnosed with a terminal illness, the biggest challenge is not despairing at what the future might bring. Gus is an ebullient, beautiful child today. Those flashes of kindness that we've been blessed with since his diagnosis are small reminders that each day we are panning the river. If we look hard enough, we'll usually find gold.
Hope for Gus Up and Running!
This post was originally posted on 3/15/10 on Wordpress: Welcome to our new blog here on Blogspot!
Hello,
Welcome to the Hope for Gus Foundation’s blog. Our son, Gus has Duchenne Muscular Dystrophy – we have been blogging on Caring Bridge, but wanted to broaden our audience, so these first couple of posts may have a ‘middle of the stream’ feel…
Here we go:
Things have been busy…Gus was fitted for his night splints, which he wears to bed every night like a trooper. I think he complained ONCE and now it’s just routine. They keep his heel cord stretched, which helps a lot with mobility. He has also started aquatic therapy and he loves it. Water is great for him because he feels weightless – which probably feels wonderful after straining himself to get around all day.
A few weeks ago we were visiting Steve’s mom up in Vermont. Gus woke up one morning and said to Steve, “Daddy, I had a dream last night. I dreamed that my legs didn’t work.” After asking him to repeat himself a few times, Steve brought him to me and had him tell me about his dream. We were stunned and wondering if it was just a fluke, or if he really has some idea about the progression of his disease. As fas as he we know, he only realizes that he wears braces and takes medicine to “keep his muscles strong.” He didn’t seem upset by the dream…just very matter of fact about it, but it was just very strange.
Anyway, we are making a lot of progress with the foundation, including choosing a name. A very special thanks goes out to fellow Francestownian Janet Hazel for suggesting “Hope for Gus.” We love it because we truly believe that if we don’t have hope, we have nothing. So, the Hope for Gus Foundation is soon to be up and running. We have a board of directors, are filing the paperwork, and have our website up. Check it out at www.hopeforgus.com You can find out more about DMD, learn how to organize a fundraiser, or donate online. We’re very excited about this – it’s a wonderful way to feel like we’re actually doing something to help Gus and other boys like him. 100% of the proceeds will go to research to help treat and/or cure DMD.
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