I came across this TED Talk by Brene Brown:  ‘The power of vulnerability’ and thought it was worth sharing.  She gives a wonderful perspective on connections and why we are here.  She discusses how connections give us purpose and meaning…

I had lunch on Thursday with a very special young man.  At only 20 years of age, Christian recently had stents implanted around his heart to unclog two major arteries.  Christian is inflicted with familial hypercholesterolemia (FH); a genetic disorder…

Below is a slideshow of the Running for Rare Diseases team from Marathon day. Click on a photo to jump to the full gallery.

Genzyme will be hosting a very special event on Rare Disease Day: the Rare Disease Day Relay. The Rare Disease Day Relay is an Olympic torch style run. Groups of Genzyme employees will run between four Genzyme locations in Massachusetts, passing…

A wise woman once wrote to me… this is what we need more of in life. inclusion. compassion. sensitivity to the people that comprise our world …the fortunate and the unfortunate. the willingness to take each other in. to believe…

During last year’s Boston Marathon event for NORD, something special happened.  My patient partner Rebecca, made a wonderful piece of artwork; a stained glass rose for our online silent auction.  The rose was purchased by a Genzyme employee, Erin, because…

April 18, 2011 (Patriot’s Day) started off with waking up at 5 AM.  I met a couple of friends and dropped them off at the Boston Common en route to Hopkinton.  From there I drove around the corner and a…

I was at a Rare Disease Event on Monday night in celebration of World Rare Disease Day (a post is forthcoming on this wonderful day).  During the event, I had a few discussions about marathon running and running in general…

For the 2nd year, the Genzyme marathon team members have  partnered with rare disease patients.  Four of the partnerships are described in this post.  Jay is partnered with Rachel, a Canavan Disease patient who we had the honor of meeting at a fundraising…