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Welcome New SWSC Chapter
Sturge-Weber Syndrome Community Canada
Canadian Volunteers Join SWSC
In less than a year, the Sturge-Weber Syndrome Community has launched
two new websites.
The original website went online in May of 2003 and was called the Sturge-Weber
Community. Glenda Ethington had used the website space provided by her
Internet Service Provider as a way to establish a support group for Sturge-Weber
Syndrome (SWS). Glenda’s 11 year-old grandson has SWS, and he and
a family in Connecticut served as her inspiration.
As interest in the website grew, the name was changed to the Sturge-Weber
Syndrome Community (SWSC). In a few short months, the SWSC joined forces
with the Vascular Birthmarks Foundation (VBF), becoming a branch.
In October of 2004, the SWSC launched a new website at http://swscommunity.org,
as membership continued to grow.
Barely nine months later, the SWSC was joined by volunteers in Canada
to form the first SWSC Chapter, Sturge-Weber Syndrome Community Canada
(SWSCC), and launching a second website: http://swscommunitycanada.org.
The SWSCC is the first website dedicated to SWS in Canada, providing support
and information in English and French languages.
Tom Gilbert serves as the Director of SWSCC, along with Stephen Hawkins,
Co-Director and SWSCC Assistant Volunteers Chantal Pichette (Tom’s
wife) and Tabitha Dunphy (Stephen’s daughter). Both Tom and Tabitha
have SWS, and can offer a special insight regarding the disease. They
both serve as inspiration for others living with SWS.
Meet the Volunteers
In their own words…
Tom Gilbert – SWSCC Director
Hi everyone, I'm the tall one with sunglasses on the front-page picture
of our new Canadian website. I'm 38 years old and I was diagnosed 4 years
ago with SWS. I do have a mild PWS on top of my eyelid and I have more
on my scalp.
My goal with this Canadian website is to be able to help anyone out there
in Canada - that you are not alone when you find out you are diagnosed
with SWS, PWS, or VBF. There are many of us out there that think we are
the only ones, but we are not. We just don't know where to turn too. Hopefully
this is where the SWSCC will come in handy for all Canadians and Quebecers
I will be looking forward to any suggestions and any help that we can
get or stories from all of you out there the better for all of us.
Stephen Hawkins – SWSCC Co-Director
I’m Co-Director of the SWSCC and the proud father of Tabitha Dunphy.
We were able to realize Tabitha's dream by driving around in a 32-foot
motor home across Canada.
We met a lot of other parents that had children with Sturge-Weber and
Port Wine Stains. This really touched me and made me realize that my goal
with this group is to prove to parents across Canada that there is other
ways of fighting this syndrome.
You must stay positive in life and be very patient, but most of all don't
let the syndrome take over your life. There is so much out there to life
than to let yourself or your children get down on this syndrome. Looking
forward to helping people out there.
Chantal Pichette – SWSCC Assistant Volunteer
Hello everyone, I'm 36 years old and I have been married to my husband
(Tom Gilbert) for 6 years now. I went through quite an ordeal when my
husband had his major seizure almost five years ago. I felt completely
alone when we were told that my husband was diagnosed with SWS. We had
no clue where to turn, but the Internet.
My goal is to help my husband and the SWSCC to get as much information
out here to all the members and families that need to know what they are
or will be going through with SWS. But I want everyone to take all this
in a positive way as much as you can, because I have seen how bad it can
get with my husband when you look at this syndrome in a negative way.
Tabitha Dunphy – SWSCC Assistant Volunteer
I'm 19 years old and glad to have joined this group to tell them my experience
with SWS, and how hard it has been for me to grow up in the beginning
with SWS. But like my father says, you have to stay positive...yes sometimes
you have bad days, but you always have to think of what's ahead of you.
I don't know what the future holds for me, but I do know I will not give
up on life because of this syndrome.
I was able to make my biggest dream come true with my dad. I have met
a lot of great people out across the country, and I will remember them
Tiffany Ethington New Program Director for VBF Kids Who Care
Tiffany Ethington, SWSC Co-Founder and Secretary for VBF, is the new
Program Director for VBF’s latest project, VBF Kids Who Care.
VBF Founder and President, Linda Shannon, established the program for
school-aged children K-12. The program will partner with schools across
the country, and demonstrate to children the values of community service,
charitable giving, while raising awareness and addressing issues of accepting
those who may appear different from ourselves.
Schools and individuals are given the opportunity to host a VBF Kids
Who Care Birthmark Awareness Campaign, and given the choice of choosing
the type of VBF fundraiser they wish to participate in. The campaign begins
September 1, 2005 and culminates on VBF Awareness Day, May 15, 2006.
Visit the VBF website
for complete details on how you can become involved and host your own
VBF Kids Who Care Birthmark Awareness Campaign.
Linda Shannon Recipient of Jefferson Award
Former First Lady and New York Senator Hilary Rodham Clinton presented
the Jefferson Awards for public and community service to VBF President
Linda Shannon at a ceremony in Washington, DC.
The mission of the Jefferson Award is “to encourage and honor individuals
for their achievements and contributions through public and community
service”. On the local level, Jefferson Award recipients are ordinary
people who do extraordinary things and have made a positive difference
in their communities, without expectation of recognition or reward.
Local recipients were recognized as unsung heroes and invited to participate
at an awards ceremony in April 2005. Of these individuals, only 15 nationwide
were selected and sent to the national ceremony in Washington DC in June
2005. You can read more about the Jefferson Awards at their website at
Thanks to everyone who helped with the evolution and growth of the
Sturge-Weber Community, the Sturge-Weber Syndrome Community, and the Sturge-Weber
Syndrome Community Canada. We couldn’t have come this far without
your help and inspiration along the way, especially our SWSC Volunteer
staff. A special thanks goes out to Linda Shannon and everyone at the
VBF, and to Missy Scott for her wonderful web design.
The SWSC is a branch of the VBF