The SynGAP Research Fund is proud to announce participation in the 7th Annual Penn Medicine Orphan Disease Center (ODC) Million Dollar Bike Ride on Saturday, June 13, 2020 to raise money for rare disease research. Due to Covid-19, the race is now virtual, but we will still be training, riding individually and raising money for this cause.
Fundraising for this event will be incredibly personal to me. About 7 years ago, my son Adam was diagnosed with a rare non-syndromic intellectual disability known as Syngap1, affecting 500 individuals globally.
Adam’s symptoms include, seizure disorder, limited speech, walking with assistance and an oral aversion resulting in a feeding tube. Adam’s daily activities consist of going to school, physical therapy, occupational therapy, speech and feeding therapy. Crawling from toy to toy can be an exhausting and challenging obstacle for Adam and other children with Syngap1.
The Million Dollar Bike Ride brings over 750 cyclists and volunteers to Penn’s campus to ride either 13, 34, or 72 miles starting in the city, and ranging across the Greater Philadelphia region. . In six years, the MDBR’s 30+ teams have raised over $10 million to fund research grants on the diseases they represent. The ODC ensures that 100% of the funds raised goes towards these pilot grants, with no overhead taken out!
To create awareness for SynGAP1 and SynGAP Research Fund, I will be riding 34 miles and hope to raise $1,000+!
To learn more about Syngap1 go to https://syngapresearchfund.org/syngap1
Thank you in advance for your support!
Syngap Research Fund Team