a message from the ceo
Many Routes to Choose From
In this issue, there is a special Routes to a Cure: Research Miracle Milestones supplement. I’m particularly excited about this supplement because
it contains exciting news with loads of ideas, leads and grant award news!
The third quarter of our fiscal year is blooming with promise! These
grant awards will be key to our further understanding of what causes
Sturge-Weber and how the blood vessels are involved. Your donations and
fundraising events have been the lifeblood that enabled the Sturge-Weber
Foundation to provide the funding to these worthy investigators.
by Karen L. Ball, SWF,
President & CEO
Speaking of special events, we’re excited to have a wonderful volunteer
committee working with us as we launch the second annual Routes to a
Cure Walk. Read more inside the issue and keep that New Year’s resolution to get fit with us as we walk the routes to a cure!
Educational Forums for 2014 kick off in Detroit, MI June 7th and we can’t wait to see you
and catch up while we also gain valuable information with exciting lectures from the Center
of Excellence staff. The Forums are a wonderful place to see old friends or meet new ones!
Hope to see y’all there. I’m often asked what keeps families or individuals engaged with the
SWF through the years such as the folks in Pittsburgh that host Danny’s Event which is
April 26th (can’t wait to go!). It’s really hard to say but if I had to guess it’s the belief they
have that blessings are meant to be shared with others, so when times of sorrow arrive they
are easier to bear. Let’s face it, some people have a cakewalk with SWS compared to those
living with a bilateral diagnosis. I’m inspired and humbled by all you do in the face of your
daily lives and recognize there are normal life events that get introduced as you or your child
grow up and SWS may not be on top of your list as it’s been for me and my family. What is
so important is to make sure everybody matters and gets it. Life is best lived when you are
not the center of it and so, so much richer!
Let’s make this 2014 Month of Awareness one of our biggest yet! The poster is begging to
be hung up around your local town...take a selfie with it and send it in to share...let’s see
how many different countries and towns we can pu Ё