For the 2nd year, the Genzyme marathon team members have  partnered with rare disease patients.  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.  Rachel also came to the marathon to cheer on the Genzyme team.
Angela is partnered with Monique, a Pompe Disease patient.  Monique is actively involved in the patient community and publishes her daily blog about her life with Pompe Disease. Monique recently visited Genzyme.  You can read more about it here.  Â
Kristen is partnered with Little Miss Hannah.  Hannah is a little girl with Type II/III Gaucher disease.   You can read more about Hannah’s story here.
Phil is partnered with Rebecca for the 2nd year.  Like Monique, Rebecca has Pompe Disease.Â
Phil and Rebecca met during a visit to Genzyme in 2010 and have had a special relationship ever since. 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!!!!
Go Angela!!
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!