Samantha was diagnosed with Homocystinuria at the age of 2 1/2 years. The lenses in her eyes are dislocated, she has some slight learning delays, and she experienced seizures at the age of 2. Despite her late diagnosis, she is doing really well. She recently became an advocate for rare diseases. Here is a link to a radio interview she did this week to raise awareness for World Rare Disease Day (which is tomorrow):
Samantha Brings Awareness to World Rare Disease Day!
Samantha, I'm so proud of you, and I'm honored to dedicate one of my 2014 Boston Marathon miles to you!
If you'd like to make a donation to NORD's HCU restricted research fund in honor of Samantha, or another HCU Hero, please stop by my fundraising page for the 2014 Boston Marathon:
http://www.firstgiving.com/fundraiser/kristinrapp/bostonmarathon2014
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