Welcome

The Sturge-Weber Foundation is the comprehensive resource for all individuals interested in birthmarks, Sturge-Weber and Klippel-Trenaunay. Since 1987, education, referrals, research and awareness are shared with care by volunteers and professionals.

Celebrating 21 Years

This website is designed to address your questions and concerns and help connect you with individuals, families, and professionals within the medical community that can offer continued hope, support, and information.* With SWF behind you, we hope you will feel more confident about your ability to assess treatment options and deal with the choices one must make to live a healthy and full life with a disorder.

How the SWF Works for You

In an effort to keep the SWF in touch with clinicians, professional groups and industry leaders, the SWF maintains a presence by attending and exhibiting at many meetings throughout the year. Notable among them at this time of year are.

  • AAD in San Antonio
  • AES in Philadelphia
  • TARP-NIH in Washington, DC
  • BIO
  • SFN
  • ASHG in San Diego

Two great ways to make Month of Awareness visible

There are new SWF wristbands available that will help call attention to SWS/PWS/KT.

They are dark green 100% synthetic silicone rubber debossed with "www.sturge-weber.org".

They are $2 each, either for individual use or in quantity for fund raising. Contact Bonnie Ayers, SWF Development Director at bayers@sturge-weber.org or call her at 800 627-5482.

You can also order these through the SWF Marketplace

There are small stickers to be used in fund raising. They are free in quantity to SWF Partners who want to use them at work, school or community events.
Again, contact Bonnie Ayers for the ordering details and to let her know how you are getting on the bandwagon.

A flash drive containing the essential documents from the web site as well as record keeping forms was sent to all families in the US. This enables families to keep their SWF information close at hand and be able to share it with doctors and schools.

We have received a record number of research grant proposals for funding. To help the SWF Work for You, you can make a short trip down to the Donate button below.

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The Next International Conference

We are planning the next International Conference for July 17-19, 2008 in Washington DC. In addition to workshops, networking and educational activities, we are planning on a trip to Capitol Hill to meet with local Congressional Representatives.
Click here for more information

Month of Awareness

May is the month each year when we encourage all of our Partners to do Whatever you Can, Wherever you Are.

If you can put up a poster in an office coffee break room, if you can give flyers to your neighbors, if you can go to your child's school and bring coloring books to their classmates - all of these small things are valuable.

If you want to get involved in a larger endeavor that brings awareness and funds to the SWF, please call or email the office. We have many ideas and many opportunities to discuss with you.

You know more about SWS, PWS and KT than almost anybody else you know. Share the Knowledge.