Welcome to my page. This year (2015) I am very fortunate to be a part of the “Running for Rare Diseases Marathon Team” and will be running my first Boston Marathon. The team has one mission, one goal: to create awareness about rare diseases.
I am running this marathon for Andrew (8 years old), who has CVS (cyclic vomitting syndrome) and autism. He is from Nashua, NH. Please visit Www.rarebutnotalone.com to learn more about Andrew and his family. Learn more about CVS here: CVS community.
For the eighth consecutive year, team members will work together to raise funds in support of programs and services of the National Organization for Rare Disorders (NORD) for individuals and families affected by rare diseases. The funds will more specifically benefit Genzyme/NORD/NIH Undiagnosed Disease Program (UDP). NORD is a federally registered not-for-profit organization (TAX ID 13-3223946). You can also learn more about NORD at https://www.rarediseases.org
Established in 2008, UDP program will help patients and physicians correctly and accurately diagnose the disease, after being accepted into NIH Clinical Center at Bethesda, MD. In 2014, UDP will expand to include network of major academic medical centers across the US.
Apart from creating awareness about rare disorders and running the marathon, I will also be raising funds that specifically benefit this cause. Every cent counts, No donation is too small. Do not forget to send me your encouragement notes, emails, text messages, facebook messages, anything to make me feel supported. Please do not hesitate to forward this weblink to anyone who you think can be benefited and donate.
Please follow my progress and fundraising activities by joining the “Running for Rare Diseases” community via Subscribing to our blog, Liking us on Facebook, Following us on Twitter and Watching and Sharing our Boston Marathon and Rare Disease Day Relay video.
I am also raising funds via have CVS awareness car window Decals and Clings.
"CVS awareness" (Cyclic Vomitting Syndrome)
Static Clings (5"x5") and Decals (5"x7") for "CVS awareness" (Cyclic Vomitting Syndrome) are available after a small donation. You can see the image on our facebook page, when you "Like" the page below. https://www.facebook.com/CVS.Speaks
You can have the cling for a donation of $10 or more and Decal for $5 or more. I will personally mail these to you after the donation. Please leave your email so that I can get in touch with you.
Thank you for your support.