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.