Thank you for visiting 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).

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.

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 and 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 has had only 2 seizures over the last 18 months.Despite the stress of Dan's deployment, Ryan has had a tremendous year of growth both physically and emotionally while enjoying kindergarten and becoming a “soccer star”!

It is  through the SWF that  I met another mom right here in MA who also has a son with SWS. Jessica and I have  become great friends and have shared a lot of emotions over the past four years. This is our third fundraiser together and we have raised over $32,000 through our efforts. In the true spirit of Emily Perl Kingsley's poem “Welcome to Holland” (everyone should read it!) it’s pretty comforting knowing you have a friend to "tour"  with.. I have the Foundation to thank for this special friendship.

For better or worse Ryan owns this Syndrome for the rest of his life. There is no cure and no 100% full proof 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.  That is why funding research to better understand this syndrome is critical and will hopefully lead to a cure one day.   

The Foundation works to foster relationships within the medical community that have lead to collaborations in research efforts which have yeilded great results. The SWF is a member of the Brain Vascular Malformation Consortium which received a grant last year to fund research. As an orphan disease, collaborative efforts help to  leverage a  position in procuring highly competitive research grants through the NIH. Research is ongoing and more recently, our family agreed to participate in a genetic study looking at SWS families with sets of discordant twins spearheaded by the Foundation and the Neurogenetics Clinic at Baylor College. Our family appreciates the opportunity to personally contribute to reseach undertaken by the Foundation.

 
I have never considered doing anything less than EVERYTHING I can for Ryan. I hope to continue to raise awareness and funding to help support the SWF's mission " to improve the quality of life and care for people living with SWS." This mission is supported by collaborative education and advocacy in tandem with transalational research as they promote effective management and awareness.

Thank you so much for your support. It truly means the world to our family.  Please feel free to pass along  to anyone who you think might want to donate, too!

Pam