Thank you for visiting our fundraising page!
Emily Grant and Mary Helen Wofford will be running their first marathon in January 2012--the Walt Disney World Marathon. We would love for you to sponsor us as we use the marathon to raise awareness of Smith Lemli Opitz Syndrome.
In March 2011, Mary Helen's son Damian was diagnosed with SLOS. It is an extremely rare genetic disorder that affects the body's ability to produce cholesterol. Oddly enough, the thing so many adults are worried about having too much of is vital to our early growth and development. Without it, many development issues can arise. Because it is rare and many children diagnosed with severe forms of SLOS don't make it past their first year, there are only about 500 cases within the US. This makes research and funds scarce, but we hope we can change this!
Damian has been through so much already (2 surgeries, 1+ months in the NICU, physical therapy weekly, and numerous doctor visits) yet he manages to be the happiest little guy we know. He's such a fighter! He's been an inspiration to us all and we hope to return the favor by raising money for the Smith Lemli Opitz Foundation.
Please help us change this by donating here on this website! Donating through this website is simple, fast and totally secure. It is also the most efficient way to support our fundraising efforts.
Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!
You can follow Damian's story here (along with Mary Helen's marathon training journey) and you can follow Emily here as she trains and fundraises.
Mary Helen, Emily, and Damian