The Sturge Weber Foundation

The SWF is cooperating with several other rare disease organizations in NJ to hold a special event on March 4^th at the State House in Trenton NJ.

This is in response to the NORD call for rare disease organizations to host an event in each state - either at the State House or in an appropriate location - on February 28, or best available date.  Through the energetic work of several  non-profit organizations there will be a proclamation in both houses of the NJ State legislature and an opportunity for  organizations to provide literature and have a panel of knowledgeable people in the fields of medicine, industry, education and patient advocacy.  The audience will be the legislators from both the NJ Senate and the NJ Assembly, or their legislative aides. 

You can check the NORD website to see what is happening in your state.  www.raredisorders.org

SWF members and volunteers are the heart of The Sturge-Weber Foundation. There are a number of ways you can get involved and help. Volunteers play a vital role in advancing the SWF's mission.  Below are ideas to get you started and we look forward to hearing your ideas too!

Please complete the volunteer event form at the beginning of you event.  We are here to help you meet your event goals and possibly have materials/ideas to help you with your event.  

Check back periodically to learn about new opportunities!  What we do today, makes their tomorrows even better!

Become a Support Volunteer
A big heart, an open mind, and a compassionate ear! If PWB/SWS/KT has touched your life, then you have what it takes! A Support Volunteer is a person who agrees to be available by phone or e-mail to people in their area who are looking for more information about PWB/SWS/KT and wish to network with individuals in their own vicinity. The role of the Support Volunteer is very important; he/she is often the first person with whom the caller is able to discuss their concerns on a more personal level. Contact Anne at This e-mail address is being protected from spambots. You need JavaScript enabled to view it  to learn more.

Become Family Day Coordinator
Family Days are informal get-togethers where families, relatives, close friends of adults and children meet and exchange friendship and experiences. In some cases it is the first time a child has met another child with a facial port wine birthmark. Or the first time a family coping with PWB/SWS/KT has been able to sit down with another family and not have to explain their child’s condition.  Family Days are initiated by members who fix a date, find a place, and make arrangements for refreshments. There is no formal program presented but the SWF provides educational materials to distribute and issues the invitation to families in the area.  The SWF office will help you with arrangements. You just have to get the idea, raise your hand and be the host/hostess. 

Hold an Awareness Event

Some people have a disease or disability that no one can see so they don't have to share information about their appearance every time they go out in public. Often, that is not the case for individuals with Sturge-Weber syndrome or associated Port Wine birthmark conditions. Sharing information about yourself, your family member or a friend can help others understand the differences and challenges faced daily. Sharing information about The Sturge-Weber Foundation make you a champion for those we serve. 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: Read more...

Please complete the volunteer event form at the beginning of your event.  We are here to help you meet your event goals and possibly have materials/ideas to help you with your event.  You can also contact Bonnie at 800-627-5482, 973-895-4445 x 106 or This e-mail address is being protected from spambots. You need JavaScript enabled to view it ; we enjoy hearing from you! 

Hold a Fundraising Event

A rare disease, a small number of individuals affected...for a lifetime. To meet the SWF mission, we count on our supporters to help raise funds. You are helping The SWF continue to provide the services we have provided since 1987. Collectively, we can find a cure and create hope for those in need and continue to be available to talk to our families and future families. By getting involved you are making a positive impact on the life of The SWF, reinforcing why we are here.  Fundraising ideas are endless.  Consider starting a Firstgiving Page or joining TEAMSWF; both opportunities are outlined below.   You can also see what other supports have done by clicking Volunteer Happenings.

Please complete the volunteer event form at the beginning of your event.  We are here to help you meet your event goals and possibly have materials/ideas to help you with your event.  You can also contact Bonnie at 800-627-5482, 973-895-4445 x 106 or This e-mail address is being protected from spambots. You need JavaScript enabled to view it ; we enjoy hearing from you!

Create a Firstgiving page

Raise money for the SWF by sharing your story to educate others through the SWF Firstgiving page.  The Firstgiving website is user friendly and a great way to share your story and link it to friends, family - all your contacts!  Check it out at www.firstgiving.com/swf.

Join TEAMSWF as an Individual on TEAMSWF or Forming Your Own TEAMSWF 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 family 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)!  Learn more at www.firstgiving.com/swf/team-swf.  Individuals raising $250 or more will receive a TEAMSWF T-Shirt.

Rare Disease Day February 28, 2013

NORD, the National Organization of Rare Disorders, designated February 28 as Rare Disease Day and asked all rare disease organizations to sponsor an event that would be state-wide in their part of the country.  

Here in NJ, legislative demands in Trenton have been focused on the effects of Hurricane Sandy this year.  But on March 4, several rare disease organizations with a presence in NJ, including the SWF, held a Rare Disease forum at the State House in Trenton. In an impressive congressional hearing room, speakers representing industry, medical research and development, education, patient concerns and grass roots awareness spoke to an audience of 50-75 people, including some legislators and their staff members. We were able to distribute our SWF literature and speak to interested passers-by.  But the by-product of this activity is a link that was forged among several non-profits here in NJ and a chance to get to know each other and educate our colleagues about the concerns we share.

Thank you to those who joined us to spread awareness about Rare Diseases on World Rare Disease Day.  We  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 annual international advocacy day to bring widespread recognition of rare diseases as a global health challenge. 

Become an Advocacy Volunteer
Your voice is being heard in Congress and by health-care policymakers. We are working to increase the government's investment in research toward a cure, educate decision-makers about port wine birthmark conditions and improve access to effective treatments. Our success is dependent upon the involvement of people like you. It's easy to make a difference - take action today!

• Tips for meeting with your congress members
• Tips for writing your members of congress
• How to find your representative or senator

Become a Medical Exhibit Booth Volunteer
Help reach important medical professionals by staffing the SWF booth when their conferences are held in your community. Greet conference attendees as they pass by, offer materials and resources, and share your personal stories as a way of promoting awareness of port wine stain conditions in the medical community. (Note: Medical organizations rotate their conferences around the country, so we keep a list of volunteers in different cities and will contact you if and when we have an opportunity in your area.)

Become a Local Publicity Volunteer
Raise awareness - help elevate PWB/SWS/KT to a national priority! Articles in newspapers and news segments on television about these conditions come to life when someone with the disorder is featured. Are you willing to be interviewed by the media in order to educate the public about PWS/SWS/KT. Local volunteers can be very effective in arranging articles and television segments about these syndromes in the media in their area.