Please remember to check out the Quick Links to the left to see how you can get involved and to see recent volunteer happenings.  We truly appreciate all everyone does to raise awareness and funds!  Did you have an event and don't see it listed?  Please let us know!

Wishing everyone  happy and healthy holiday season!

What We Do Today:

 Please remember the SWF this Holiday Season

Thank you to all who have responded to our appeal for funding; your support is truly appreciated. 

We are looking to you, our friends and supporters, to help us reach our  goals.  Your 2011 donation will help us do even more good for those we serve. 

There are many ways to give to the Sturge-Weber Foundation.  Here are just a few.

• Make your donation online by
• Send a check by mail
• Pay it forward by sending this volunteer newsletter to your friends asking them to consider making a donation to the SWF 
• Friend us on Facebook and share the link with your friends and family
• Host a fundraiser in your community
• Volunteer

We are all facing challenging economic times, but a lot of people can each do a little bit to accomplish great things.  You have the power to be part of the solution...to be part of the cure.

Sincerely,

Karen L. Ball President & CEO

Checks should be made payable to: The Sturge-Weber Foundation and mailed to P.O. Box 418, Mt. Freedom, NJ  07970.

Credit Card payments accepted on the SWF secure website at

www.sturge-weber.org/donate/html.

The Sturge-Weber Foundation is an active member of the Coalition of Skin Diseases and we are excited to share a great new way to enable medical professionals to refer patients with SWS/KT/PWB to the Struge-Weber Foundation.

We are asking for your help to share this new application with your medical professionals so this can go viral and help future individuals dealing with SWS/KT/PWB.

The iPhone was developed by the Skin Coalition's UT Southwestern resident Shadi Kourosh, MD in conjunction with Dr. Paul Bergstresser and the Society of Investigative Dermatology. Dr. Kourosh presented the app at the TDS Fall Meeting in Temple, TX.

Innovative approaches to gauge progression of

Sturge-Weber Syndrome

Status: Recruiting

Study Summary

Please Note: The Rare Diseases Clinical Research Network will make every effort to enroll all the patients they can, but they cannot make any guarantees that we will be able to enroll everyone in a particular study who wants to participate. 

Background

Individuals with Sturge-Weber Syndrome (SWS) sometimes have brain involvement which can result in seizures, stroke-like episodes and neurologic deficits. The purpose of this study is to conduct an investigation of the natural history, morbidity, and mortality in people with Sturge-Weber syndrome, develop a new test for monitoring brain progression in SWS and to investigate the underlying cause of SWS.

The research aims are:

1.  To develop a national database of patients with Sturge- Weber 

     syndrome

2.  To determine the usefulness of urine tests and to investigate

     whether this test can demonstrate progression of brain involvement

     caused by SWS

3.  To look at the genes of people with SWS and their family members to

     find the cure of SWS

About this Study:  Learn More by visiting the BVMC Website and register today!   Please visit yoru nearest center for evaluation.  Too far?  Contact swf@sturge-weber.org for more information on telephone consent participation.

V-Dac is a free, convenient service for converting that extra car, truck, or RV into a tax deductable donation benefiting the Sturge-Weber Foundation. You can donate online or call

877-999-8322

V-Dac's trusted service makes sure your vehicle is properly handled so you get your tax deduction the Sturge-Weber Foundation, gets the benefit of your donation.  Start now by clicking on "Donate Now" below. If you are not ready to donate, find out about donating your vehicle by browsing all the valuable information and links on our site.