Family opt250SWF 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! What we do today, makes their tomorrows even better!

 

 

 

 

 

 

 

 

 

 

 

WalkingShoe2014 optJoin teamSWF Route to a Cure Team

Join 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. 

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rddlogo150optRare Disease Day February 29, 2016

World Rare Diseas Day is held on the last day in February each year.  2016 is LEAP YEAR so World Rare Disease Day will be the rarest day of the year!  The day was first launched by EURODIS and its partners in February 2008.  Over 84 countries participated in events in 2015.  Please join the Sturge-Weber Foundation, the Global Jeans Project and many other rare disease organizations to help create greater awareness for our rare disease community of millions in raising awareness on February 29, 2016.  

Click here for details on how you can get involved this year!

 

 

 

 

 

volunteerhands opt There are lots more ways to get involved too!

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.  Questions?  Contact Anne at This email address is being protected from spambots. You need JavaScript enabled to view it..  Please complete the volutneer application for this position.

  

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. Questions?  Contact Anne at This email address is being protected from spambots. You need JavaScript enabled to view it.. Please complete the volutneer application for this position.

 

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.  Awareness Event Ideas for School

Please complete the fundraising 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.  When you are finished, please complete the after your event form so we can post your accomplishments to the website and in Branching Out! You can also call 973-895-4445 or This email 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. You can also see what other supports have done by clicking Volunteer Champions.

Please complete the fundraising 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.  When you are finished, please complete the after your event form so we can post your accomplishments to the website and in Branching Out! You can also call 973-895-4445 or email This email address is being protected from spambots. You need JavaScript enabled to view it.; we enjoy hearing from you!

 

Become a Bilingual Volunteer:  Use your bilingual skills to translate important information to affected individuals and families needing Foundation services.  Contact Anne This email address is being protected from spambots. You need JavaScript enabled to view it. for more information. Please complete the volutneer application for this position.

 

Become an Advocacy Volunteer:  The community needs your voice to help advance research, facilitate treatment development, and improve access to quality medical care and innovative treatment options.  Click her to see how you can become an Advocacy Volunteer!