Van Tran's Page

NATIONAL ORGANIZATION FOR RARE DISORDERS, INC.

2015 Running for Rare Diseases Team!

Boston, Massachusetts

Van Tran's Page

Thank you for visiting my fundraising page!

As some of you are aware and folks who are not aware I will be participating in my very first Boston Marathon this year.  I am running as part of the Genzyme Running Team and NORD (which stands National Organization of Rare Disorders).  

For those of you who aren't aware of what NORD is or who it supports it is The National Organization for Rare Disorders. It is comprised of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them.
- For more information please visit their website, it provides a lot of great resources and information. https://www.rarediseases.org/about

As part of the Genzyme/NORD running team each runner gets paired with a patient partner/family.  I have been paired with an absolutely wonderful family in Kelly, Steven, and Steven (Bug).  Bug has a rare disease that is currenlty undiagnosed which means there is not an available treatment at the moment.  Below are a couple links that can provide a little bit of background on it:

http://www.ncbi.nlm.nih.gov/pubmed/24631656

http://www.ncbi.nlm.nih.gov/pubmed/24468074

I am excited to take part in my first ever marathon; however I am more excited to be part of this effort to raise awareness on Rare Disorders and how they impact so many lives.  This is why I run.  For my teammates, NORD, and especailly my patient family (Kelly, Steve, and Bug!).

Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.

Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!

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$3,500
goal
$150
raised
4%