Sep. 8, 2015
TOPIC: Featured News
Posted by Christina Jensen
Established in 1987, the Sturge-Weber Foundation is dedicated to acting as a clearinghouse for information on all aspects of port wine stain conditions and Sturge-Weber syndrome, and offering support to all interested parties. The group seeks to educate the medical community, government agencies, and the general public; promote the funding of ongoing medical research; and establish a registry of affected individuals. The Sturge-Weber Foundation provides appropriate referrals and offers a variety of educational and support materials. These include a resource guide, medical articles, and brochures on all aspects of Sturge-Weber syndrome.
1.) What does it mean to you personally to be a patient organization serving the rare community?
It is powerful to know that we can reach out to a family that needs information, or a networking opportunity, and be able to provide them with accurate and useful information on the rare disorder that they may be coping with. By being able to contact them ourselves assures the patients that they will be provided with contact information for knowledgeable and experienced doctors. We are happy to know this means they will not have to be searching on their own for a doctor who can help.
2.) What do you find your patient community values most from your organization?
The families and individuals often respond with appreciation and thanks for the attention we paid to their request. They value the fact that they no longer feel isolated and in the dark about Sturge-Weber syndrome (SWS).
3.) What are some of the challenges your organization has faced?
Fund raising is always a challenge for any small rare disease organization – and awareness is key. The fact that the families who need our support the most are the ones least able to contribute financially, means we always need to find new streams of revenue, which can be a challenge.
The internet has broadened our reach internationally, and we are often at a loss to provide solid information to third-world countries or non-English speaking families. Our website, which is a comprehensive look at Sturge-Weber syndrome, has the capability to translate the entire website into any language! But responding to non-English-speaking requests is still difficult.
Having a small staff is an on-going challenge for us, but that can work to our advantage. For example, people think we are a larger foundation that we actually are and when they find out our size, their appreciation level, and hence their willingness to volunteer increases.
4.) Whats been your most successful awareness campaign and/or fundraising event?
Having SWF Awareness Month in May is the focus of our outreach, and emphasizing that Awareness is everybody’s job all year round. It is a consistent theme in newsletters, activities and events. Learn more about our Awareness Activities here.
P.O. Box 418
Mt. Freedom, NJ 07970-0418