Kathy, SWSC's new Volunteer Representative
THE STURGE-WEBER SYNDROME COMMUNITY
A worldwide community for individuals and families
living with Sturge-Weber Syndrome
This site is dedicated to the adults and children living with SWS,
and their families and friends.
Each case of SWS is unique to the individual. The needs of a patient
can vary greatly, depending on the symptoms and their severity.
We hope the information provided on this site will prove beneficial
to those seeking help and answers about SWS.
Please contact the SWSC if you need further help or information,
or if you have any suggestions or comments.
Cause of Port Wine Stain/SWS Identified in Recent Study
Or download the pdf
VBF Launches Day of Awareness- We need 25 families
Thank you for your support of VBF and the VBF International Day of Awareness.
Many of you have participated every year, since its inception on May 15, 2004.
Families and individuals have hosted annual bake sales; garage sales; sold stickers,
bears and bracelets; celebrated a birthday by hosting a party for VBF; were
featured in newspaper and magazine articles and local television news programs
– the list goes on…
There is really no proper way to thank each and every one of you for support,
and for raising awareness of vascular birthmarks and the associated syndromes
and conditions. VBF has one amazing support network.
As you know, the downturn in the US economy has had an impact on all aspects
of life, including charitable giving. Donations to VBF are down 40 percent,
while the free services VBF provides to patients and families have continued
to increase. For this reason, your continued support of Day of Awareness is
more vital than ever.
If you haven’t participated in VBF Day of Awareness, please join the
VBF family of tradition and giving by hosting an event in your community: http://www.birthmark.org/awareness
with birthmarks have met this challenge by becoming active participants in raising
awareness. Saige Cavayero, now in college, serves on the VBF Board and designed
and sold bracelets for Day of Awareness. Saige also designed a poster to highlight
the 2010 awareness campaign.
Elizabeth Peters sold stickers for a “Wall of Fame”, Gabriella
Gomillion donated her own toys to sell and raise funds, Laura and Heather Toulson
hosted a lemonade stand, Evan Ducker wrote a book that launched the “Buddy
Booby’s Birthmark International Read-Along”, and Owen Dreger hosted
a read-along at his school: complete with a play performed by a class at his
VBF President and Founder, Dr. Linda Rozell-Shannon, along with VBF Executive
Assistant Basia Joyce, VBF Office Manager Lauren Palmateer and VBF Board member
Lianne Chase, are organizing the second annual VBF 5K Run/Walk in New York.
VBF Board members Danielle Vlahos and Rose Shea will host a walk/run in Boston.
VBF Board member and wife of VBF Expert Dr. Stuart Nelson, Peggy Nelson, is
hosting a wine tasting event in California along with Peter Zellner and Lauri
Annual awareness participants include: VBF Board members Brian and Natalie
Bolinger, hosts of the Texas Hold ‘Em and Auction; Jan and Andrew Dreger
(Owen’s parents) host Campbell’s Boat House for VBF at their family
restaurant; Robin Houwman sells pendants to raise funds for VBF and other birthmark
VBF would also like to acknowledge the support of members like Jill and Paul
Brown whose daughter Aslynn underwent surgery for a massive hemangioma, and
VBF Honorary Chairs Frank and Barbara Catalanotto whose daughter Morgan had
a hemangioma. Like so many parents of children with birthmarks, their efforts
on behalf of VBF are outstanding.
It’s never too early to plan your event! Visit the VBF Day of Awareness
website today to register your event, or for ideas on how you can help. Here
are some helpful links to get you started:
· VBF Day of Awareness website: http://www.birthmark.org/awareness
· “Tell Your Story”. Share your experiences with other
Remember, May 15 is Day of Awareness, but events can be held any time during
THANK YOU VBF FAMILIES AND FRIENDS!
Use of the Atkins diet for children
with Sturge-Weber Syndrome