Jason Fedelem's Page
Thank you for visiting my fundraising page to benefit The Sturge-Weber Foundation.
Many of you who know me know that I have a "birthmark". Actually, its not a birthmark, its a Port Wine Stain, or PWS. Somewhere between 6% and 25% of people with a PWS also have Sturge-Weber syndrome. I am one of those.
Sturge-Weber syndrome affects different people in different ways, with neurological causes usually being the root of the issue. I haven't had any siezures since I was 2, but I am blind in one eye, have glaucoma, and get migrane headaches, all of which are results of Sturge Weber.
Recently the Sturge Weber foundation was part of a group that found the cause of Sturge Weber syndrome after 25 years of research. It is a post-conception genetic mutation that causes this. For more specific information on the recent findings, you can read this PDF: http://www.sturge-weber.org/images/stories/BVMC/explaining_gnaq.pdf
As an individual, I am very functional, but not everyone with SWS is. Many people have significant cognitive impairments, neurological limitations and other negative outcomes.
Now that the cause has been found, the Sturge Weber Foundation is seeking to find a cure. If you are interested in supporting this research please feel free to do so.
I look forward to participating in this event.
Many thanks for your support - and do not forget to forward this to anyone and everyone you think would like to help!