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Members of Congress are directly responsible for Federal programs that advance medical research, facilitate treatment development, and improve the quality and accessibility of healthcare. As a rare disease, it is safe to assume that lawmakers have little to no understanding of Sturge-Weber syndrome and associated conditions and the unique needs of affected individuals. The lack of information on Capitol Hill means that valuable medical research and public health activities may overlook our community.

 

The best way to ensure that Congress makes decisions, laws, and policies that empower our community is to use your voice and your story to personally educate your elected officials about the condition, the community, and contemporary issues. Connecting with your Members of Congress is easier than you might think. The Foundation is here to educate, assist and support you every step of the way.

 

becomeanadvocate75optThe first step is as simple as letting the Foundation know that you would like to become an advocate: complete the volunteer application.   

 

Pictured from left to right: Joseph Stewart, Dane Christiansen, and Dale Dirks, of the Health and Medicine Counsel of Washington

 

   

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An advocate is anyone who volunteers to reach out to their elected officials, use their voice and story to educate them about the community, and ask for their assistance on key legislative and policy issues. To ensure our voice on Capitol Hill is as strong as possible, individual advocates work together as part of a nationwide grassroots network and often conduct coordinated congressional outreach at key times or in connection with certain events.  

 

 

  • Monthly Advocacy Call: Learn about the current issues impacting the community as well as opportunities to make a difference. The monthly advocacy call is a great opportunity to meet other advocates and to have your questions about advocacy answered. If you are interested in advocacy, please contact us for call information.
  • Monthly Advocacy Update: On a regular basis, the Foundation releases a written update on key issues and our efforts on Capitol Hill. These updates often include instructions on how you can contribute to advancing key issues. Updates can be found here: link.
  • Capitol Hill Advocacy Day: Volunteer advocates travel to Washington, DC, each year for comprehensive advocacy training and meetings with their Members of Congress. This event is an outstanding opportunity to learn about the issues and build relationships with the offices of your elected officials.
  • Advocacy Panel at Conference: Learn about advocacy, contemporary issues, and have your questions answered during the upcoming 2015 SWF International Conference in Chicago, July 16-18, 2015.  Have you registered?  Check it out!
  • Local Congressional Visits: Each August House Representatives and U.S. Senators return home for a prolonged period of time to connect with your constituents. This is a convenient and valuable opportunity to meet with your legislators back home. [Please register and we will help schedule these meetings and even connect you with other advocates in your area for group meetings].
  • Letter-Writing Campaign: Throughout the year, it may be important to write your elected officials, introduce yourself as a constituent, and ask for assistance on key issues. By coordinating with the Foundation, we can ensure your personal letters are hand-delivered to the appropriate staff in your legislators’ Washington, DC offices.  ACTION ALERT: June 2015: Sign onto a letter supporting federal medical research into Sturge-Weber Syndrome.  Click here for details.

 

becomeanadvocate75optGet Empowered! Become an Advocate:

Complete the volunteer application to become an advocate today! 

 

 

2015 Legislative Agenda  

 

Get to know the current policy issues impacting medical research and patient care by reading our 2015 legislative agenda. (click 2015 legislative agenda above)

  

Monthly Updates

 

 

 

CapHill2015around210optMay 2015: The Sturge-Weber Foundation 2015 Capitol Hill Advocacy Day

 

On Monday, May 18th, and Tuesday, May 19th Sturge-Weber syndrome (SWS) advocates from across the country participated in the Foundation’s first annual Capitol Hill Advocacy Day. Affected individuals and family members representing six states traveled to Washington, DC, to educate their lawmakers about SWS and contemporary issues impacting medical research and treatment access.

 

The event started with a networking dinner for participants that featured presentations on advocacy training and legislative issues. On the morning of May 19th, advocates went to Capitol Hill in teams to meet with the offices of their U.S. Senators and House Representative. Over a dozen additional congressional offices met with advocates during a luncheon briefing for legislators. During the luncheon, leading medical researchers provided an overview of SWS research activities and patients recounted their personal stories.

 

Throughout the day advocates met with legislators across the political spectrum, ranging from Senator Elizabeth Warren (D-MA) to Congressman Ryan Zinke (R-MT-At Large), to promote a bipartisan message of awareness and understanding. Advocates spoke from the heart about their SWS experience and asked congressional offices to prioritize research activities and address barriers related to the out-of-pocket cost of certain therapies.

 

If you would like to become an advocate for the SWS community and work with others to engage your legislators, please let us know and consider joining us for our next Capitol Hill Advocacy Day!   Check out Karen Ball's Blog regarding 2015 Hill Day! Hill Day It Takes Two

 

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  See more pictures of our advocates in action!

 

 

 

 

  

 

capitolbuildingpicture200 optApril 2015: Please join us on May 18th and 19th for our first Capitol Hill Advocacy Day!

 

You do not need any experience in advocacy or congressional outreach to participate. All that’s required is a desire to create positive change for the community of individuals affected by Sturge-Weber syndrome (SWS). By educating your Members of Congress about the condition and the needs of patients, you can enlist their support in efforts to advance research, facilitate treatment development, and improve access to care and available therapies. 

 

On Monday, May 18th, volunteer participants from across the country will travel to Washington, DC, for a networking dinner. This dinner will feature a comprehensive advocacy training session that will include a review of contemporary policy issues impacting the community and an overview of how to make an effective congressional visit. The next day, we will have breakfast together before splitting in to teams for scheduled meetings with congressional offices. Our Washington Representatives from the Health and Medicine Counsel of Washington will join and assist us for all of these visits on Capitol Hill.

 

This will be a fun and rewarding event for those who make the commitment to attend. Beyond advocacy, the leadership of the National Institutes of Health will be presenting an overview of the SWS medical research activities during a luncheon briefing for advocates and congressional staff on May 19th.

 

If you would like to participate in Hill Day, please register here: Hill Day RegistrationTo participate in our 2015 Hill Day you must register before COB Friday, May 1st.

 

If you cannot attend, but would like to participate in advocacy activities moving forward please email Anne Howard at This email address is being protected from spambots. You need JavaScript enabled to view it. 

 

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Karen L Ball, President and CEO with US Rep-NJ Leonard Lance (Chair, Rare Disease Caucus) at the Patient Services, Inc reception in conjunction with the annual American Academy of Neurology meeting in Washington, DC, April 2015.