“…seek to make your life long, and its purpose in the service of your people…”
– Chief Tecumseh
Once in a while, I think everyone needs to be able to take a few minutes and reflect on the current order of things. It helps to keep a person grounded, and it can serve as a reminder of where he / she has come from. As Jimmy Valvano once said (and I’m paraphrasing here), “…it’s important to spend some time in thought – to think about where you’ve been, where you are, and where you want to be…”. Well, while spending a number of very late nights learning how to enhance the Do Away With SMA website, I decided to follow Jimmy V’s recommendation and reflect. I’ll give you all the crib notes version of this exercise….but I tend to use 100 words when 10 will do – so grab a glass of cabernet and get comfortable.
Where We’ve Been….
I had two younger brothers that passed away from Type I SMA in the mid 1970’s. This was a time where doctors did not know much about this genetic disease, other than the mortality rate…which was 100%. SMA – Spinal Muscular Atrophy – is the number one genetic killer of children under the age of two in the entire world. It is estimated that 1 in 6,000-10,000 (the statistics vary a bit depending on the source) babies are born with SMA, and the carrier rate for this disease is approximately 1 in 40. That translates into approximately seven million carriers of SMA in the USA alone. Back in 1975, when my brother Johnathan was diagnosed and, four months after birth, was claimed by this disease, there were no support groups that specialized in helping families understand what was wrong and how best to handle these circumstances. There was no internet for quick, voluminous research on the topic. My mom was basically left to her own devices to handle the losses of her two sons.
Instead of letting this dark period drag her into the abyss, she fought back. She raised me the best she could, she worked harder than anyone I have ever met in my life, and she became the role model that any son would be proud of.
Now fast forward twenty three years. It is 1998, and I find out that I’m going to be a dad. Knowing my family history, I visit a geneticist and have it estimated that my daughter has a 1 in 400 chance of having SMA at birth. SMA Type 1 – otherwise referred to as Werdnig-Hoffman disease. It is at this meeting that I am also made aware of the fact that there is a chance that, based on my family history, I could still develop SMA Type 4 (otherwise referred to as adult-onset SMA) in the coming years. This form of SMA decides to spring itself on people in their thirties (usually around the age of 35, although sometimes it can be seen as early as the age of 18). I left Einstein Hospital in the Bronx feeling fairly crappy…and motivated to do something to help fight this disease.
Now fast forward fifteen years. It is 2013, and I’ve been active in the running community for approximately eight years. I’ve run marathons to raise money to fight childhood obesity in NYC, I’ve run half marathons and marathons for the Families of Spinal Muscular Atrophy (now known as Cure SMA), and I just finished up a project simply referred to as the “12 in ’12”, where I ran a marathon a month in 2012 to raise donations for the Dream Team Project, which benefits the Make-a-Wish Foundation. I guess that, as I evolved as a runner, I decided to heed the words of Tecumseh and use my love of marathoning to help others. I needed to run for a charity, because it kept me motivated when I felt like quitting (and that was OFTEN). But like Eric Thomas says “…dont’quit – you are already hurting, so might as well get a reward from it.”. For me, the reward was being able to point to money raised and knowing that it went to a good cause. Kids in a NYC public school now have an after-school running program. Money has gone to SMA research to find a cure. Money has gone to fight cancer. Finis Coronat Opus – the end crowns the work.
As I became a more active part of the running community, I got to meet some incredible people. People that – quite simply – made me shake my head and say “dude, you are awesome.”. I met people who lost significant mounts of weight and went from couch to half marathoner / marathoner through sheer force of will. I met people to served our country in hostile territory, showing more courage than I would ever be able to summon. I considered myself extremely fortunate to become part of a community of people that were – quite frankly – much better than I was. Through meet-ups at races and social media outlets, I became close friends with several of these incredible people. So, in 2013, a group of us started discussing an idea. We wanted to do something unique – and we wanted to do it for a good reason. They all knew my family story, so we decided on SMA as the target of our efforts. The end result of our blue-sky meetings was the formation of a charity: Do Away with SMA (“DAWS”). As of January 2014….DAWS became a reality.
Where We Are…
Since January 2014, we’ve been able to raise thousands of dollars in donations through three separate virtual 5k runs, a fun 10k where two of our Board Members ran as Ana & Elsa from Frozen, and a long distance run from the Walt Disney Family Museum to the front gates of Disneyland. All this hard work gave us the ability to make a $5,000 donation to Nationwide Childrens Hospital’s SMA Clinic on December 31st, 2015.
Where We Are Heading….
2016 will be a fantastic year for us. We have several fund raising events already on the schedule:
Our fourth virtual 5k – The Fourth Awakens – is under way! Please check out the home screen of our website (www.doawaywithsma.org) to sign up and be a part of the fun!
I’m going to run my first Ironman in Sonoma, CA on July 30th in order to raise donations and awareness for SMA. I’m going to try to broadcast live from the event through Periscope, in order to give you all a taste of the 140.6 mile journey.
On September 29th, we are going to be a part WDW Today’s World Slowchase in Epcot. Please check out the News & Events section of our website for more details!
I’m sure we’ll have at least one event to announce in the coming months, so please stay tuned for updates.
In addition to these fund raising events, we are in the process of developing Team DAWS – a running team for people of all abilities. We are developing this team in anticipation of announcing the first marathon event that we, as a charity, will officially be a part of. This is not a quick & easy process to complete, but progress has already been made. We plan to provide our athletes with a training program, access to a closed group on Facebook where the team can discuss concerns, share recommendations and provide support for each other, and VERY cool swag!
How to Keep in Touch…
Here’s where you can find updates on all of our upcoming activities!
Facebook: Do Away With SMA
Twitter & Periscope: @dawsforsma
Address: Do Away With SMA, PO Box 237118, Ansonia Station, NY NY 10023