Running for Rare Diseases



The Boston Marathon runners.

Last month I had the honor of meeting with several Genzyme employees, including 11 who are running in the Boston Marathon. These spirited athletes are participating in the Running for Rare Diseases program to raise funds for NORD (National Organization for Rare Disorders). Each runner will run on behalf of a patient which will also help raise awareness as well as giving them a real connection to those fighting rare diseases.

“My” runner, Angela DeLucco. Run, Soul Sister, Run!

Please visit their website for more information. You can show your support for this incredible group Genzyme employees by making a donation or just leaving a comment to cheer them on.


  1. Well done to Shane James, who suffers with the horrid condition Stiff Person Syndrome. To be able to run, let alone complete Marathons is wonderful to say the least.
    As a fellow sufferer I am always inspired by this fantastic man. You raise awareness Shane…. Well done on a great time !!!

  2. You’re a great inspiration to us fellow sufferers who are unable to do some of the things you do , as you know Stiff Person Syndrome affects us all in different ways and long may you give us the hope and inspiration to carry on fighting and raising awarness ….. You are a real HERO Shane .

  3. Yes, you are a great inspiration and you encourage us to getting physical, what is good for us. Your will, your determination, your strength is remarkable and I thank you because you made ​​it for us all. Thank you to our companion in misfortune, suffering from a horrible disease, which we send the message to us all for the cause, no matter our city, our country. Carole, Quebec, Canada

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