The Sturge Weber Foundation

Thank you to everyone who sponsors third party events to benefit The Sturge-Weber Foundation. So many aspects of SWS and associated Port Wine birthmark conditions are out of our control but our ability to raise money, raise awareness and support each other is within our control if we have the will to do it. As a part of the SWF community, we all need to join hands to keep the torch burning so the thousands of people being served since 1987 will continue to be served by the SWF's toll free access line, family networking program education, physician referral service, medical education programs and research endeavors. The SWF was here for you yesterday, is here for you today and with your help we will be here for you tomorrow and future generations.

Would you like to plan an awareness or fundraising event?  Contact Bonnie at This e-mail address is being protected from spambots. You need JavaScript enabled to view it or 973-895-4445 x 106.  Click here to see additional events from 2011 and earlier

What we do today makes their tomorrows even better.  Large or small we thank you all.

2012 Bake Sale

Maddy T., 11, and her friends planned and ran a bake sale to support the SWF in honor of her brother Charlie, who is 9.  The Tiffany's company, DCT, matched the proceeds and made a generous $400 donation.  The presented the check to Karen Ball at the San Diego Education Day on March 18th.

2012 Neuroscience Nurses Day at Nationwide Children's Hospital

We were happy to have three SWF members manning a table at the Neuroscience Nurses day at Nationwide Children’s Hospital in Columbus on March 2.  Christine G. whose son Max is 10 and knows the hospital quite well, was there along with Marti and Joe M., grandparents of one of our cuties, Mila, who is 2.

They report that more nurses attended than expected so they were busy chatting and fielding questions with the more than 100 nurses who attended.  Christine says that about half the nurses, who work with neurologists and neurosurgeons, knew of the SWF, but about half did not. So we were able to raise more awareness among a group of professions who are in key positions. 

The SWF materials that remained after the conference were given to the Center of Excellence at Nationwide, for use in the waiting room there. 

Nationwide, in Columbus, is one of our Centers of Excellence were parents will find teams of specialists who are experienced and knowledgeable.

2012 Peer Assistance Group

Jazmine . has been a prime mover for the Peer Assistance Leadership program at her high school in Moreno Valley, CA. She is a junior and VP of the group. One activity is helping a special needs softball team.  She meets fellow SWF teen member Leilani C. and her mom at the practices.  Her softball team can see Jazzy and Leilani together and now her friends know why she is doing what she is doing. To see the full story, see page 13 of the April 2012 Branching Out magazine.

2012 Recycle Business Going Strong

Jason R. is making the most of his business contacts to benefit the SWF through his recycling business.  He is creating large boxes for his business clients as a drop-off location for aluminum cans.  On the outside of the box, he is putting 10 SWF packets to spread the word further among employees.

2012 A Boy Scout is Helpful and Generous

Devon B. is a school chum and fellow Boy Scout of Jeremy H.  His troop, Troop 603 in Yelm, WA, recently held a raffle to help Jeremy’s family defray the training cost for his new service dog, Banyan. They distributed SWF materials so that people would know and understand why Jeremy has a dog. Part of the funds raised came to the SWF, along with a lot of awareness among the public and knowledge among the Scouts. Here are Jeremy and Banyan among their friends. 

2012 Sand Troopers

Chris S. of Chicago was on the front lines of the Steel City Con in Pittsburgh with his Sand Troopers contingent, aided by son Tyler.  This is a regional toy and pop culture show that attracts hundreds of Star Wars collectors and fans.  Each year he distributes SWF awareness materials to people who know all the light sabers and Jabba the Hutt, but never heard of Sturge-Weber syndrome.  This year he also raised over $300 at the event!

2012 Rare Disease Day

Thank you to everyone who participated in raising awareness and funds on World Rare Disease Day on February 29, 2012 - a truly Rare Day!!! The SWF partnered with the RARE Project, NORD and many other rare disease organizations to help create greater awareness for our rare disease community of millions!  Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge.  Click Here to see how SWF volunteers got involved.

2012 Uno Chicago Grill and the Ribak Family

Thank you Mitch and family for coordinating an Uno Chicago Grill Night in the Orlando area raising $373.94 for the SWF.  Since they did so well at publicizing the event, the SWF received 20% of the sales total for the evening. (sales under $1000 receive 15%) Great job and thank you!