Monday, April 20, 2015


If you're a runner, then you might, just might have some knowledge of a little race held in Massachusetts every year called the Boston Marathon. =) Even if you're not a runner, after the bombings in 2013, I'm guessing you have at least heard the name.

Boston is pretty much the top of the top marathon in this country (and attracts elites from other countries, hello Kenya and Ethiopia) just below the Olympic Trials. You cannot just register, you have to qualify, and then hope you make it past the lottery. It is probably one of the toughest races to get into in this country. Even for the Olympic Trials, if you qualify, you're in..not so much for Boston. It has become the pinnacle of racing for marathoners.

However, there is a group of runners that can race the Boston Marathon without meeting the qualifying standards. These are the charity runners. Or what I prefer to call them, the awareness raisers. 

I've run my fair share of races. I love running and keep threatening to go for a run despite having had surgery less than a week ago (don't worry, I'm only joking =P mostly...). When I first started running, I didn't understand why someone would sign up to run a race, AND commit to having to raise some amount of money. Why not just pay the registration fee? But as I look back on my own race experiences, now I can see why. Where else do you have the opportunity to share with literally THOUSANDS of people a cause that is incredibly important to you? Racers wear gear that show off the name of the organization that they are representing and race 26.2 miles through a city where spectators, racers, officials, and innocent bystanders are doing nothing but watching. The organization gets more "views" during a race than it may get in a few months of the year combined! And when it comes to raising awareness, getting the name out there is the first step.

As I've mentioned in a couple previous posts, I am part of the Running for Rare Diseases 2015 Team as the patient partner to Fran Crofts. There are over 100 patient partners and runners on the team this year. Many are running Boston today, and another group (including Fran) is running the Providence Marathon on May 3. Still others are running races in other parts of the country and even in Europe! Some of the runners are fast and may have qualified for Boston in their own right, but others do not quite meet the qualifying standards. Yet they are still running the race on behalf of this team, committed to raising awareness for rare diseases.

The awareness opportunity is incredible! This is the biggest marathon in the country in terms of media presences, especially after the events of 2013. There are approximately 30,000 runners registered for 2015. In 2014, there were an estimated 1 million spectators along the race course. That does not include race officials, media personnel, security, and people that just happen to live in Boston and stumble across the race on race day. Where else does Running for Rare Diseases have the opportunity to get their name out there and make people aware of the need for research for the 6800+ rare diseases in this country?

So I'm excited! Not just for the runners who have spent months and years working to meet the tough qualifying standards, although I am happy for them as well. But for the opportunity to spread awareness about rare diseases that many people have no idea exist. The first step in gaining research funding for the Undiagnosed Diseases Program is making people aware of the desperate need that many families have for answers. So I'm excited to see runners and spectators representing the Running for Rare Diseases Team this year!

The Boston Marathon is being live streamed on today from 7am-3pm, so check it out and watch for the Running for Rare Diseases Runners!

Please consider helping us raise awareness and funding by supporting my runner, Fran, in the Providence Marathon in less than a month as she represents not only my story of being diagnosed with a rare disease but all those searching for answers!

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