I am running the 2013 Boston Marathon with the Genzyme “Running for Rare Diseases” Marathon Team in April.
This was an unimaginable concept for me until the last several weeks. Lisa and I have probably watched the race at least 15 times during our time in Boston, and I never seriously considered running it. I have always joked that with my frame and sprinter-twitch muscles, at best I might someday get fit enough to walk/jog from starting line to our home at mile 19.
Until this past few weeks, the longest run of my life was about 9 miles (when I got lost in the roads behind UConn). Until September I was lucky to get 10 miles in a week, but a 1000 miles of bike rides and commutes dropped 20 lbs of weight and some PT got my calf muscles working again.
Even since Brianna was diagnosed with HSP, I’ve been looking for the right angle to raise awareness of her disease within Genzyme and in the outside world. There isn’t a near term cure to pitch as a manufacturing opportunity and the R&D is in early pre-commercial stages. The company itself had several major issue to get past first as well. I have some of the right management connections internally, but at best I might be able to swing a seminar by a leading researcher.
It hit me that perhaps the best way to raise awareness would be through the Genzyme Marathon Team, which raises money for the National Organization for Rare Disorders (NORD). I helped get this team started in 2007 by setting up the team website (http://runningforrarediseases.org) and configuring a wordpress blog to serve as the silent auction site. The auction site raises over $5K a year towards the team’s fundraising.
I was the official photographer for the team last year (photo gallery) and one of my photos is the current background on the www.genzyme.com website. Genzyme also had a video made of the event (catch me with camera at 1:15):
I figured maybe this coming year I’d might be able to leverage my team membership as photographer to get some HSP news out. After Steve coaxed me into a 5K and a triathlon, I started to feel more like an athlete again. As the days got short and bike riding got less convenient, I started running more. I had been imagining running the marathon all year through my bike training, but now it started to feel like a real possibility. Just the thought of committing to the race almost instantly dropped off another 15 lbs, and I started to think of daily runs as not being x miles but as fractions of a marathon distance.
On Saturday Lisa dropped me off in Framingham on the course and I ran through Framingham, Natick, Wellesley, and up the Newton hills for 15 miles, so distance is starting to look feasible.
I was officially named to the Marathon team last week. I am so honored that Brianna will be my patient partner, and will join us on race weekend. Together we will raise awareness of HSP and SPG3A inside Genzyme and to the outside world. The race is Monday April 15th.
I just set up my fundraising page on firstgiving.org. All donations to the site pass straight through to NORD are tax deductible, and you will get a charity receipt directly from NORD (I can provide one as well). You can also send me a check I can pass along and avoid credit card fee they deduct if you prefer (it will still log onto the totals the site displays). My goal is to raise at least $2500 for NORD.
I figured I would share the link now in case you want to get a jump on 2012 tax deductions:
http://www.firstgiving.com/fundraiser/jackprior/2013bostonmarathon
The race is still 124 days away, but donating now will ensure I keep up my training schedule through the winter months :-). I’ll be posting something to the newtonsportsphotography.com site soon that you can share outside the family.
I feel so honored that you are running on Brianna’s behalf. I think back to 2 1/2 years ago when we were going through the whole diagnosis process and coming to terms with the fact that Brianna would have a lifelong disability. It was devastating at the time, but we had such wonderful support of family and friends. And now I look back at how our lives have changed – I started jazzercising and have become an instructor. And now you are training for the Boston Marathon! Good things have come out of it. And she is doing great! It gives me such happiness to watch her progress and get better all the time. Keep up the great work Jack! Can’t wait to cheer you on in April! 🙂
As the president of the Spastic Paraplegia Foundation, I along with so many in our community thank you for your valiant, altruistic and loving efforts toward this goal of bringing awareness of the rare condition, Hereditary Spastic Paraplegia to so many. Please know that there is a community of wonderful people like Brianna standing behind you, rooting and cheering you on.
Thanks Karen — I will post something on runningforrarediseases.org soon that you can share out to the public vs. our little family scrap book site here. From that post we can link to sites providing more HSP information. You guys can also do post(s)from Brianna’s perspective. The team is figuring out how to coordinate all that now.
Thanks Frank — I’m happy to do it, and am inspired by Brianna’s perseverance and achievement.
A great cause at a super race.
Go Fast.
Joe
You and Brianna are very inspriational!
Good luck on the training and the race.
Paul
Just a note that the team fundraising is going toward the NORD organization. It might be better for Prior family donations to target more narrow HSP organizations (e.g. Dr. Fink). My goal with respect to HSP is really visibility for the desease and research into rare disease companies and NORD itself.
Jack, you and Brianna are an amazing Team. I am honored to support you in your great goals. Gram
Great uplifting story after the tragic day in Sandy Hook
We will be supporting you now and in April
Gampy