Welcome to the Vascular Birthmarks Foundation and Sturge-Weber Syndrome Community Canada

EN FRANÇAIS

The SWSCC provides information and support in English and French languages.

SWSC Canada Group

A worldwide community for individuals and families
living with Sturge-Weber syndrome

The Sturge-Weber Syndrome Community Canada (SWSCC) is the first website dedicated to the adults and children in Canada living with SWS, and their families and friends.

The SWSCC hopes to promote interest within the Canadian medical community and public-at-large, while helping to improve issues regarding the treatment and diagnosis of SWS and its related symptoms.

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 SWSCC 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

 

 


Logo for VBF Dr. Martin Mihm Scholarship Program
VBF Dr. Martin C. Mihm, Jr. College Scholarship Program


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

Poster by Saige CavayeroChildren 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 grandmother’s school.

Owen's Read-Along at preschoolVBF 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 Firstenberg.

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 organizations.
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 families: http://www.birthmark.org/awareness/story.php

Remember, May 15 is Day of Awareness, but events can be held any time during the year.

THANK YOU VBF FAMILIES AND FRIENDS!


New Research

Use of the Atkins diet for children with Sturge-Weber Syndrome


Meet LeiLani - Makeup consultant for VBF/SWSC Canada

LeilaniLeiLani offers her services free to patients with port wine stain and other vascular birthmarks who feel they would like to wear camouflage makeup.

She works closely with the Burn and Trauma Unit at Vancouver General, along with the Lupus society and Cancer patients. LeiLani also donates a percentage of product sales back to VBF/SWSC and other charitable foundations in Canada.

Click here to learn more about LeiLani, the makeup, and her charitable works.


 

mission statement

The Sturge-Weber Syndrome Community, a branch of the Vascular Birthmarks Foundation, provides support and services freely and upon a volunteer basis for individuals and families living with SWS and vascular birthmarks, while sponsoring research and promoting physician education and awareness, as well as education of the public at large.

DOA Logo
Don't Forget!
Every Day is a Day of Awareness for VBF!
Visit the VBF International Day of Awareness Website:
birthmark.org
/awareness



Good Search

What if the SWS Community earned a penny every time you searched the Internet? Now it can! GoodSearch.com is a new Yahoo-powered search engine, with a unique social mission... every time you use GoodSearch, money is generated to support the mission of VBF. Just go to www.goodsearch.com and be sure to enter the Vascular Birthmarks Foundation (we are a branch of VBF) as the charity you want to support. The more people who use this site, the more money we'll earn so please spread the word! www.goodsearch.com