Thank you for taking the time to visit my fundraising page! I am looking forward to running the Falmouth Road Race once again this August as part of the Sturge-Weber Team, helping to raise money and awareness for the Sturge-Weber Foundation (SWF). Our successful fundraising for the SWF of over $53,000, over the last two years, has rewarded us with an allocation of 10 numbers for this year's 40th running. We are thrilled to have an additional five great friends joining our team this year.
My son Ryan was born with a port-wine birthmark covering his entire left eye and forehead. He was diagnosed with Sturge-Weber Syndrome (SWS) at 6 months of age. Sturge-Weber Syndrome (SWS) is a rare medical condition characterized by a facial port wine birthmark (in most cases) and varying degrees of glaucoma and/or seizure disorder and often developmental disability. Ryan had his first seizure at 9 months. Ryan’s seizure activity had been relatively well managed through medication until September 2008 when he began having seizures almost daily for an extended period.When we began a pre-surgical evaluation for Ryan to have a Hemispherectomy, the SWF provided us not only with an invaluable resource network but also emotional support through such a difficult period. Fortunately, we managed to get Ryan's seizures under control through trial and error of different medications. Ryan's seizure activity has been relatively well controlled over the last few years, in fact, this summer will represent an important milestone for Ryan in that, it will be exaclty two years since his last seizure!!! Simply amazing!! Ryan is an incredibly happy first grader who loves soccer and gardening.
Ryan will not outgrow this syndrome and will constantly be challanged by his disability. There is no cure and no 100% effective way of preventing seizures. He will always be at risk for seizure activity, glaucoma and learning disabilities. We are in a constant state of striving to maintain the perfect balance of medication so that he is not over tired but effective enough to protect him from seizure activity.
I am thrilled to have been recently nominated to the Board of Directors of the Sturge-Weber Foundation and I look forward to participating in the execution of the Foundations mission to improve the quality of life and care for people with SWS through collaborative education and advocacy in tandem with transalational research, effective management and public awareness and to help attain the Foundation's ultimate purpose of finding a cure or specific means of control for SWS and related diseases.
I live everyday trying to do everything I can to support Ryan and to keep him well. Raising money and awareness for this orphan syndrome is just one additional step that I can take to contibute towards a brighter future for children afflicted with Sturge-Weber Syndrome.
Grass root initiatives such as this fundraiser are paramount to the Foundation's ongoing efforts to support our family and the thousands of others living with this condition. Thank you so much for your support. It truly means the world to our family.
With great appreciation and love,
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