Newsletter
July 2005
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 Co-Director
Chantal Pichette (Tom’s wife). Stephen Hawkins and Tabitha
Dunphy (Stephen’s daughter) serve as Assistant Volunteers.
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 out there.
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.
Chantal Pichette – SWSCC Co-Director
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.
Stephen Hawkins – SWSCC Assistant Volunteer
I’m 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.
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 all.
Shannon Clarke - SWSCC Administrative Volunteer
Hey people! I'm 33 years old and work with Tom Gilbert, SWSCC's
director. Before I met Tom, I had never heard of SWS, but over the
last 3 years I have become more aware and have witnessed the symptoms
caused by SWS.
In May 2005, I was given the opportunity to also meet Tabitha Dunphy
and her father Stephen Hawkins. AMAZING! Not one part having SWS
has broken Tabitha's spirit. She is always laughing. I have been
sharing both Tom and Tabitha's stories to all my friends and family
and nobody seems to know anything about SWS. This is a very sad
thought. If there is absolutely no awareness out there, how can
anyone help and how can we accumulate the funds for research?
My mission is to help spread the word to get some awareness out
there, so that the families living with SWS can feel less alone
and helpless due to the lack of information. So that these families
have other people to share their hardships and triumphs with and
can feel some unity. So that the entire world becomes aware of SWS
and can get involved to help spread the word and become the important
support system for the families with SWS.
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 www.aips.org
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.
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