Rare disease Day in Canada

Rare Disease Day takes place on the last day of February to raise awareness of rare diseases and their impact on real people’s daily lives. In 2012, a relay style torch run, linking the work sites of Genzyme in Massachusetts, was started to draw attention to this important day. The international theme for 2013 was “Rare Disorders without Borders” and with the relay now growing to involve other countries, including cycling in the Netherlands and the first leg of the relay starting in Waterford, Ireland, the global theme was truly fitting.

relay with torch

As part of the day’s events, a patient speaker was invited to share their story of living with a rare disease. That’s when I had the chance to meet Emma Rooney, National Gaucher Foundation of Canada representative, who spoke to employees in Waltham, where I work for Genzyme as a scientist. It was amazing to hear firsthand Emma’s story of growing-up with Gaucher disease and how she’s encouraging others, through the My Normal project, to share their own childhood stories of having a rare condition.

0189-0591

Being a proud Canadian myself, I was excited to connect with our Canadian visitor before her talk. It was neat to find-out that Emma’s also a keen runner! Later we came to realize how we are both training for races taking place on the very same day in Germany! Having made this connection, it was easy to stay in touch by email with regular updates on how our training was progressing.

On Sunday, September 29th, Emma will be running the Einstein-Half-Marathon and I will be participating in the historic Berlin Marathon, where after the events at Boston, I’m most anticipating reaching that finish line! With the wheels in motion we also started making plans to meet up after our shared race day. I’m really looking forward to rendezvousing with Emma in Germany, where we can in-person share the stories of our running races and rest our feet a little by hiking in the Allgäu Mountains.

Now I’ll hand it over to Emma for some of her “running thoughts”. Here’s what she has to say about this running connection: So I’m Emma and I can tell you that meeting some of the members of the Boston Marathon Team at Genzyme and taking part in this year’s Rare Disease Day Relay refocused my energy and enthusiasm for running. What runner wouldn’t be left inspired after having the chance to carry a torch in an Olympic style relay race along the Charles River? It wasn’t that I’d never ran before or didn’t already consider myself to be a runner, but rather it was the first time I seriously reflected on what it meant to me to run with a rare disease. In my case, Gaucher, a lysosomal storage disorder that as a child and teen had often left me with serious bone pain and feeling overly exhausted when I desperately tried to keep-up with my peers in running.

spring 10km race running route
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We are both curious and fearful of any new disease that we hear about. We stayed glued to the TV news if we hear of an “outbreak” of some sort. We fear as much as we investigate.

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Popular Q&A

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What are some strange and rare PHYSICAL diseases?

What are some rare and really strange physical diseases? For example Elephantitis. Im doing a presentation and would like to show some diseases that arent commonly known.

Alien Hand Syndrome

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