I was in AZ last weekend to participate in an event for TGen’s Center for Rare Childhood Disorders  and the Wylder Nation Foundation.  The event consisted of a tour of TGen’s research facility followed by a dinner with the employees…
Running Tales by Emma
This April, I will be running in the Boston Marathon raising awareness for Rare Diseases, a cause that I am very passionate about. In a previous blog post, my patient partner Emma and I shared our story of how we…
Posted in Patient Stories, Running Stories Tagged with: patient partner, rare disease day, rare diseases, running
I Run for Quinn
On Monday, April 15th, 2013, my husband and I ran the 117th Boston Marathon while I was 14 weeks pregnant. Six months later, we welcomed to the world a beautiful baby girl that we named Emerson. She joined her two…
Posted in Patient Stories, Running Stories
TGen Running for Kids with Rare Diseases team
What a great weekend meeting my patient partners for this year’s marathon team. Hayden and Tanner invited me to meet them this weekend to run on their T-Gen Running for Kids with Rare Diseases team at the P.F. Chang Rock-n-Roll…
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Shauna – Rothmund-Thomson Syndrome
Meet Shauna – Rothmund-Thomson Syndrome How do I describe my own child? Obviously a little on the bias side, but here goes! Shauna is a blessing that came into our lives 9 years ago! She is extremely inquisitive and I…
Posted in Patient Stories
The Start Before the Start……
So it begins the start before the start of the 2014 Boston Marathon. It is an honor to be part of the Genzyme Boston Marathon Team, an honor to run on behalf of this organization, all the patient partners, and for the national organization of rare diseases in support of a life-saving/life-changing cause.
Posted in Patient Stories
Living a Happy Life – Sam Berns
On Friday, we lost Sam Berns,  a remarkable young man to Progeria . Sam, age 17,  was diagnosed at 22 months of age with Progeria, a rare, fatal genetic condition characterized by an appearance of accelerated aging in children.  Children with…
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