Sturge-Weber Foundation Hill Day
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 below. If you cannot attend, but would like to participate in advocacy activities moving forward email Anne at ahoward@sturge-weber.org