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Welcome to the 1st edition of the SWF Foundation's Volunteer News. As a small Foundation of a rare disease, we need to join hands to help
raise funds and spread awareness and hope for individuals affected and living with Sturge-Weber syndrome and related port wine birthmark conditions. So many aspects of these rare conditions are out of our control but our ability to support each other, raise awareness and raise money is within our control if we have the will to do it.
Don't forget to check out "volunteers lending a hand" Quick Links in the left hand column to see what fellow supporters are doing to help sustain the Sturge-Weber Foundation.
What we do today, makes their tomorrows even better.
Please contact the office with ideas, suggestions, things you want to do in your area; we are here to help. Contact Bonnie at |
| Brain Vascular Malformation Consortium - Register Now! | |
 Innovative approaches to gauge progression of
Sturge-Weber Syndrome
Status: Recruiting
Study Summary
Please Note: The Rare Diseases Clinical Research Network will make every effort to enroll all the patients they can, but they cannot make any guarantees that we will be able to enroll everyone in a particular study who wants to participate.
Background
Individuals with Sturge-Weber Syndrome (SWS) sometimes have brain involvement which can result in seizures, stroke-like episodes and neurologic deficits. The purpose of this study is to conduct an investigation of the natural history, morbidity, and mortality in people with Sturge-Weber syndrome, develop a new test for monitoring brain progression in SWS and to investigate the underlying cause of SWS.
The research aims are:
1. To develop a national database of patients with Sturge- Weber
syndrome
2. To determine the usefulness of urine tests and to investigate
whether this test can demonstrate progression of brain involvement
caused by SWS
3. To look at the genes of people with SWS and their family members to
find the cure of SWS
About this Study: Learn More by visiting the BVMC Website, Take Action Today! Please visit yoru nearest cneter for evaluation. |
| TEAM SWF | |
Your investment in The Sturge-Weber Foundation  brings hope to those who need it most through education, awareness and research. Together we can continue to care and share compassionate outreach and be a champion for those we serve.
You can support the fight against Sturge-Weber syndrome and associated Port Wine birthmark conditions by signing up as an individual on TEAMSWF or forming your own TEAMSWF event encouraging your friends and familly to join your team to raise money along with you. Either way you can participate in the event of your choice (from a 5K to a triathlon)! Check out
Runner's World Race Finder to find an event in your local area.
Learn more at www.firstgiving.com/swf/team-swf. |
| Don't Let Congress Hurt American Charities |
The focus in Washington of late has been on deficit reduction. Unfortunately, a powerful group of Senators wants to raise revenues by reducing key tax benefits for donating to charities.
At a time when government services are being cut across the country, it doesn't make sense to make it harder for nonprofits to do their jobs. If anything, we should increase the incentives for individuals to donate, not reduce them.
Making it harder to donate to charities would impact thousands of nonprofits and the people who rely on them. Given that even President Obama's recent budget proposal includes cutting the charitable giving tax break, it's more important than ever that we act now.
More than 59,000 people have already signed the petition, but the goal is 65,000 signatures to make sure our voices are heard. To learn more about the petition, click here. If you decide to sign the petition, you will be asked to give your name, address, email. After submitting the information, a new page will come up that asks you "if everything looks correct click and sign now." At the bottom of this page their is a checkbox for Care2 Action Alerts. If you do not wish to receive future correspondence from Care2 you need to uncheck the box.
Thank you in advance for taking action, and for your continued support,
Karen L. Ball
President & CEO
The Sturge-Weber Foundation is neutral and it not affiliated with any political party. |
| What We Do Today | |
 What we do today, makes their tomorrows even better. Can you imagine having the power to be part of the solution...to be part of the cure?
The Sturge-Weber Foundation and you are the voice for infants, children and adults who are afflicted with life threatening orphan birthmark related diseases like Sturge-Weber syndrome and Klippel-Trenaunay. Our voice needs to be heard.
Even in these challenging times, a lot of people can each do a little bit to accomplish great things and adding your voice to The Sturge-Weber Foundation will help us continue to:
- Drive research into the cause and cure;
- raise awareness about these diseases;
- develop life care options programs
- network and support thousands of diagnosed individuals as their syndromes evolve and progress;
- and so much more!
Let your voice be heard by making your gift today to The Sturge-Weber Foundation. Your are making an investment that will lead us to a cure.
Sincerely,
Karen L. Ball President & CEO
Checks should be made payable to: The Sturge-Weber Foundation and mailed to P.O. Box 418, Mt. Freedom, NJ 07970.
Credit Card payments accepted on the SWF secure website at
www.sturge-weber.org/donate/html. |
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Sturge-Weber Foundation
