Thank you for visiting my fundraising page!  The Sturge Weber Foundation is in great need of funds to continue their research.  Their goal: to find a cure for Sturge-Weber Syndrome.  In the mean time they are a source of support for families, like mine, living with the uncertainty of this syndrome.  Please read the information about my non-profit choice or visit www.sturge-weber.org.  The rarity of this syndrome makes the Sturge-Weber Foundation invaluable. 

As bumpy as the road has been for Mary Kate it pales in comparison to some other children and families dealing with this syndrome.  Your prayers and support give us hope that for her, the syndrome will be managable.

Mary Kate was diagnosed at 3 months old as having Sturge-Weber.  This syndrome has caused Mary Kate to have seizures and headaches. She could develop glaucoma, hemiparesis and strokes. We see a pediatric neurologist often and a pediatric opthomologist every 3 months to check for glaucoma.  She has had 5 laser treatments with a dermatologist to stop her port wine stain from deepening.

If you help the Sturge-Weber Foundation it will aid in research, help educate families at yearly conferences, and maybe even one day find a cure or effective treatment.

Sturge-Weber has been deemed as an Orphan Disease by the National Organization of Rare Diseases (NORD). Sturge-Weber has not been researched by doctors and the medical community as much as other diseases due to the very few who have it. The disease is non-hereditary.  It is estimated that three of every 1000 newborns have a port wine stain birthmark, and of those 3-of-1000, between 8 and 16% will be diagnosed with Sturge- Weber syndrome.

Your donation will help Mary Kate in many ways. Including awareness and sponsorship for SWS related programs. The Foundation's commitment is to improve the quality of life and care for those affected by supporting individuals and families through guidance, advocacy, referrals and education while building partnerships to research the cause and management of Sturge-Weber Syndrome.

Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.  The donation goes to firstgiving, who sends it directly to the swfoundation.  Please contact me if you have any questions or concerns.  My goal is $2000.  That is only 200 people who give $10 each.  Cash in your change and donate it to a great cause!

Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!  And please ask your employer about a matching donation program.  If you are interested in hosting a fund raiser and would like information please contact me! 

Thank you.  Of course your prayers are our number one request...keep them coming.

Sincerely,

Katie, Greg, Aleia, Ryan and Mary Kate

Check out http://youtube.com/watch?v=NYJaD-DCGR8&feature=related for another youtube video supporting the Sturge-Weber Foundation.