Have you benefited from the information, education, friendly support, and encouragement you received from the Sturge-Weber Foundation? Don't keep it a secret.
Have you shown Branching Out to a neighbor or relative or have you given brochures or Check It Out cards to your doctor, employer or church friends? Keep that good feeling moving along.
Let's be Partners and Maintain the Momentum.
AWARENESS. EMPOWERMENT. RESEARCH.
Every SWF member can do something during Sturge-Weber Foundation Awareness Month or throughout the year!
A rare disease, a small number of individuals affected, but for a lifetime. Together we can make a difference. Join us to improve services and understanding of a birthmark many have never heard of yet. We need your voice to be heard around the world. Hope starts with you. Click on the quick links below of ideas link below and get started today!
Each year, during the month of May, we ask our members to re-dedicate themselves and focus their attention on helping create awareness of SWS/PWS/KT in any way possible. Your investment in The Sturge-Weber Foundation makes a difference now and in the future. Activites listed can be completed any month; please get involved!
The Vision of the Sturge-Weber Foundation is that in all areas of life – public, professional, personal – the following goals will be achievable for our members.
In Awareness – when the public will be able to see past the disability to the person.
In Empowerment – when families and individuals will be able to obtain the medical care,
employment, education, respect and personal achievement they seek
In Research - when the pace of discovery will not be hampered by lack of resources and will lead continually toward a cure and advances in treatment.
2013 Month of Awareness Poster: Poster as found on the inside back page of Branching Out April 2012 Issue and displayed above
2013 Month of Awareness Flyer: Flyer with detailed information about SWS, KT and PWF
Firstgiving: Create a Firstgiving page and share your story with your contacts
Dine-In For Donations: Invite family, friends and neighbors for a Dine-In Party at your house
Volunteer Opportunities: Now is the perfect time to get involved, check it out!
Volunteer Happenings: Check out what volunteer are doing around the country to raise awareness and funds
Make a Donation Today: by clicking the link or sending a check to the Sturge-Weber Foundation and mailing it to P.O. Box 418, Mt. Freedom, NJ 07970.
Other things you can do to support the Sturge-Weber Foundation:
Be a champion to cure! Help us identify effective treatments that could benefit many individuals with SWS. We encourage anyone with a SWS diagnosis or facial port wine birthmark to join the Sturge-Weber International Patient Registry. The Registry is critical for scientists and physicians involved in researching and treating SWS. Click on this link (www.swsregistry.org) to learn more and get connected.
Weber International Patient Registry. The Registry is critical for scientists and physicians involved in researching and treating SWS. Click on this link (www.swsregistry.org) to learn more and get connected. Thank you.
- Become our friend and "like" us on Facebook
- Add "Learn more about SWS, KT, and PWB at www.sturge-weber.org to your email signature
- Have a lunch and learn at your office. Contact
for brochrues and material
- Send your email and contact information to
to start receiving E-News, Volunteer News and other important SWF information.
- See if your office has a corporate giving program - Let's work together!
- On Twitter? Tweet to raise awareness about SWS, KT and/or PWB
- Tell 3 friends about the SWF and what they can do to make a difference
- Create your own awareness video and post it on YouTube.
- Contact your local newspaper and ask them to write a story about your family and your journey with SWS/KT and or PWB.
- Download the SWF Poster or Flyer under Quick Links above and ask your workplace, school, physician and place of worship to post it.
- Purchase the 2nd edition textbook, Sturge-Weber Syndrome at the SWF Marketplace.
- Show your spirit but purchasing SWF Apparel at the SWF Apparel Shoppe.
- Make your annual donation to the SWF this month, every donations counts! See quick links above.
- Order copies of A Kids Guide to Sturge-Weber Syndrome, Teen Guide to Sturge-Weber Syndrome, Someone Special, or Color me Different Color me The Same Coloring Book and donate them to your school and library in your community.
- Ask your local television or radio station to feature child affected by SWS, KT and/or PWB.
- Visit www.sturge-weber.org and let us know 3 new things you learned on the site.
- Are you part of the "Yahoo support Group?" Contact Anne at
and join the conversation.
- Did you know the SWF is celebrating its 25th anniversary? Simply amazing! As we grow, sometimes records get outdated or new information has not been shared. In an effort to provide the best referrals possible and include your doctor(s) on research updates and other information shared by the SWF Medical Advisory Board, we are requesting the following information about your Dermatologist, Neurologist and Ophthalmologist: Name, Specialty, Address, Phone Number, Email, Web Address. (If they do have a web address, we should be able to get all the information. Please send this information to
- Learn about the importance of tissue donation at www.ndriresources.org and register today.
- Share a copy of Branching out with a friend or co-worker.
- Sponsor a SWS, KT and/or PWB event at your school, business, club or organization and donate the proceeds to the SWF.
- Send an email to
with a testimonial of what the SWF has meant to your during your journey.