Thank you for visiting my fundraising page! I am excited to be participating in the Falmouth Road Race as part of the Non-profit for Numbers Program. Through the efforts of our friend, Jessica Melo, the race organization granted for the first time, the Sturge-Weber Foundation (SWF) five numbers. This is a great opportunity to help raise awareness and funding for the Foundation, which has provided enormous support for our family.

Ryan was born with a Port Wine Stain which covered his left eye and a majority of the left side of his scalp and was diagnosed with Sturge-Weber Syndrome when he was six months old. He had his first seizure when he was nine months old. Ryan's seizure activity had been relatively well managed through medications until September 2008 when the level of seizure activity increased to 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 in our family's life. Fortunately, we managed to get Ryan's seizure activity under control again through trial and error of different medications. I am thrilled to say that Ryan has been seizure free since April  2009 with the exception of one incident in February of this year when he was very sick with both an ear infection and strep throat. He is doing so well and is the happiest and most gregarious child around. 

 The Foundation was inspired by one set of parents efforts to help raise awareness and become a resource for others living with Sturge-Weber Syndrome and other Port Wine Stain related conditions. The Foundation has been providing educational support and advocacy services to over 5,ooo families both nationally and internationally since 1987. More recently the Foundation announced that the SWF will participate in the Brain Vascular Malformation Consortium , marking a significant leap forward for SWS research. This award was granted through a collaborative effort with two other foundations, which helps to provide access to NIH funding through the Rare Disease Clinical Research Networking.  The tenacity of this effort illustrates how the staff of the Foundation has acted on behalf of all its members to help advance the knowledge and understanding of this syndrome and will continue to "lead the fight to increase the pace of discovery for our rare disease". 

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.  It is also my responsibility as a parent to Ryan to  help raise awareness and funding for the foundation so that one day there will be cure or at the very least a better understanding of this rare disease. So please take the time to donate as every penny counts toward a better understanding of this disorder.  

Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.

Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!