For the 2nd year, the Genzyme marathon team members haveÂ Â partnered withÂ rare disease patients.Â Â Four of the partnerships are described in this post.Â
Jay is partnered with Rachel, a Canavan Disease patient who we had the honor of meeting at a fundraising event last year.Â Â Rachel also came to the marathon to cheer on the Genzyme team.
Angela is partnered with Monique, a Pompe Disease patient.Â Â Monique is actively involved in the patient community and publishes her daily blog about her life withÂ Pompe Disease. Monique recently visited Genzyme.Â Â You can read more about it here.Â Â Â
Kristen is partnered with Little Miss Hannah.Â Â Hannah is a little girl with Type II/III Gaucher disease.Â Â Â You can read more about Hannah’s storyÂ here.
Phil is partnered with Rebecca for the 2nd year.Â Â Like Monique, Rebecca has Pompe Disease.Â
Phil and RebeccaÂ met during a visit to Genzyme in 2010 and have had a special relationship ever since.Â Rebecca posted about her marathon day last year.
As a 27 year old patient with MPS I Hurler-Scheie or Scheie syndrome another rare disease for which Genzyme (and biomarin) make the enzyme replacement drug replacement I want to commend you for this effort and thank you for raising awareness! Keep it up!!!!
I have known Monique since she was in kindergarten. Her mom and dad couldn’t do enough for her and I think that helped her reach her goals when growing up. She has achieved a lot and now with Pompe, she is not letting down. Her positive attitude and pretty smile makes me continue to cheer her on! So Angela, you are running for a beautiful person!! We’ll be there in spirit, my husband and I, as you run each mile for such a good cause!