Big week to start March off

What a week!  Sunday I ran the Hyannis Half Marathon, the longest road race I’ve done so far; Monday, the 4th Annual Rare Disease Day, I met the woman for whom I’m running the Marathon.   Then today, I ran 18 motherslappin’ miles.

At the half marathon, I posted a 1:59:02, which makes me very happy; I had been shooting for 2 hours so to actually meet the goal I had set was pretty awesome.  I no longer run with an iPod with a timer, so I had to guess at how hard I should have been running.  With approximately 5 miles left, I ran past a church with a clock tower and realized that breaking the 2 hour mark was totally attainable.  The weather was a miserable mix of rain, sleet and snow but it didn’t matter once I crossed the finish line. 

As I said, Monday was International Rare Disease Day and Genzyme commemorated the day by inviting Suzanne, the woman I am paired with for the www.runningforrarediseases.org program as well as Jean Campbell, a patient advocate who worked for many years at NORD to speak at Allston.  Suzanne’s story was so powerful and inspiring; I carried it with me through my long miles this week and was able to draw from it today during the afore-mentioned 18 miles, which I’ll get to later.  I also spoke to the site about my experiences training and running.  Stef came to support me, which was nice.  We then went to my teammate Radhika’s fundraiser at Za followed by dinner next door at EVOO with Suzanne her husband Bob and one of Genzyme’s patient advocates, Kathleen.  It was great to have a chance to sit down and get to know Suzanne and Bob and to make plans for Marathon Monday.  They plan to come back to Boston to cheer me on to the finish line, which is awesome.  Dinner was delicious; Stef and I are planning on returning, so if you’re wondering what’s good in Kendall Square, look no further. 

Today’s run was rough and not because I had an ill advised omelette.  After about 7 miles I was really feeling this week’s 31 miles in my legs and feet.  There wasn’t a major muscle group in my right leg that didn’t hurt, from the bottoms of my feet, all the way up to my hip, some part of each section either ached or just outright hurt.  I still had so far to go, though, but one of the good things about picking routes that bring me so far away is that once I’m out there, I might as well run back.  So, that’s what I did; I remembered Suzanne’s story and all she overcame because she had no other choice.  I did have a choice, though.  I could have hobbled over to the train and packed it in for the day but instead I finished out my run and head into work.  I went to work on a Saturday after running 18 miles because I was reminded this week of what’s at stake if patients don’t have their therapies on time.  I remembered that there are 6000 rare disorders which people face that still need a treatment.  So, I’ll keep running for them and I’ll keep running for Suzanne regardless of how much my legs hurt.

My International Rare Disease Day speech with less jokes and ad-libbing and more Rs

Thanks Sandra and thank you, everyone, for giving me the opportunity to tell you a little about this year’s Running for Rare Diseases Team.  We’ve had ten people from multiple Genzyme sites come together to raise money to help support the National Organization for Rare Disorders.  NORD is a non profit organization dedicated to ensuring that research for orphan drugs like the ones we make here continues to be productive and that patients never need to go without their life saving drugs.  Jean will talk more about NORD, their advocacy and the Orphan Drug Legislation later.  

For those who don’t know me, I’m Matt O’Shea, I work in Manufacturing Compliance and Training.  I’ve been here for just shy of 10 years, most of which I did not spend running every morning.  Like I said, there are 10 of us from Waltham, Framingham, Genzyme Center and Allston Landing.  Most of the team members have run marathons before, some have run Boston and a few of us, myself included, have never run a marathon before. 

Part of the Running for Rare Diseases program is that each runner is paired with a patient who we will run the Marathon in honor of.  I have been paired with Suzanne, who lives with Gaucher’s and who we’re lucky enough to have join us for Rare Disease Day.  Ever since I joined Genzyme, I’ve always been proud of being part of a company that makes drugs that have a very real impact on people’s lives.   Keeping the patients in mind has always helped motivate me here and now it’s helping me to train for the Marathon.  On more than one occasion, towards the end of a long run that I decided would include a big hill at the second to last mile, when I thought I didn’t have anything left to finish, reminding myself that I’m not just running up this hill for myself but that Suzanne is also counting on me to finish helped me to find that little extra bit I needed.  It also helps to remind myself that there are so many other diseases that, unlike Gaucher, have no therapies and that there is a very real need to help raise awareness for NORD and their mission so that work can continue.  

For more information, you can visit our website, Runningforrarediseases.org, where you will find posts from both patients and runners, links to our many fundraising events like the one tonight at Za over in Kendall Square and the upcoming bowling event at King’s in the Back Bay on 3/18.  There’s also a link to my blog where you can find some of the gritty details of what it’s like to run through one of the worst Boston winters in recent history

I’d now like to welcome Jean Campbell, a consultant with JF Campbell Consultants LLC, and a recognized and respected advocate for patients with rare diseases.