photo by Nilesh Ghandi.

Story by Emma Rooney @blumencasey

Despite ringing in the New Year with a nasty cold, I woke up January 1st longing to stay in bed rather than think about resolutions to get healthy. Setting new goals somehow felt disloyal to my last year’s self. Sure, there was nothing perfect about my 2015. In fact, too many doctors’ visits, undeveloped story ideas, and abandoned exercise training plans were more the norm, than being extra productive as I had hoped.

I hesitated, however, on a new goal setting task that might overwrite all my previous undertakings. Some days it was an accomplishment just getting out of bed. Once up, stringing together a few sentences on the laptop or going for a run felt hugely successful. Working on my self is not a new story. Yet looking back, I see that many of the experiences that have helped me to get healthy were actually started with different aims.

In 2014 I first joined the Running for Rare Diseases team (Running4Rare) with the primary goal of raising awareness and support for the rare disease community. As a patient partner, I was matched with Andrew, a team runner who was preparing to participate in the Boston Marathon. Since I liked running, I decided to support my partner by training together. Even while living on different continents, with a six hour time difference, we managed to schedule weekly runs at the same time. Knowing that someone was counting on me, meant I never skipped these practices. Not only did the routine help me to get fit, it made it easier to get to know Andrew. It also became more comfortable to share my rare disease story with new audiences. The story was no longer about illness, instead the focus shifted to why #weruntogether.

Last year Running4Rare grew beyond a company initiative, started in 2008, when four employees from Genzyme ran the Boston Marathon for the National Organization for Rare Disorders (NORD). The 2015 Running4Rare team involved 100 runners from different fields and representation from 58 different rare disease communities. As members of Running4Rare, Andrew and I travelled to France for the 2015 Paris Marathon. Despite the countless kilometers we had racked up, over months of virtual runs, it would be our first opportunity to run a race side by side. Not only did we cross the finish line together, but our running story had inspired a local team to join our efforts. An incredible group of 36 runners came out with us, supporting the French lysosomal storage disorders association VML (Vaincre les Maladies Lysosomales).

Screen Shot 2016-01-29 at 3.53.55 PMThe excitement of the marathon also gave Andrew and I the chance to address French Sanofi employees, including many researchers. We began by sharing the Running4Rare mission to form partnerships between passionate runners and rare disease patients with a shared goal of making a difference on behalf of the greater rare disease community. We talked about why being involved matters to us, and this led to me speaking about my personal journey with Type 1 Gaucher Disease. When I returned home, retelling the race story became another opening to discuss running with a rare disease. Prior to Paris, most of my running friends were unaware of my involvement with the rare disease community. Afterwards they wanted to show their support, and this made for a full house during the fundraising lunch I organized to celebrate completing 26 miles Running4Rare.

If you are looking for the right motivation to get active this year, consider taking part in a charity event such as the Global Genes 2nd Annual Virtual Denim Dash for Rare Disease https://www.crowdrise.com/denimdash, coming up March 19th-27th, 2016. Participating in a fun event is a chance to tell your rare disease story with an engaging twist, helping to reach new people along the way. For a list of other story ideas, go to the RARE Toolkit: Using Storytelling to Raise Awareness for Your Rare Disease https://globalgenes.org/toolkits/storytelling-2/putting-together-the-story/.

 

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