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The Hydrocephalus Association brought together over 50 key volunteer leaders from the hydrocephalus community to advocate for meaningful change on Capitol Hill. Participants included WALK to End Hydrocephalus<\/a> Chairs, Community Network<\/a> Leaders, and dedicated patients and caregivers who met with congressional representatives to raise awareness of those affected by the condition.<\/p>\n As HA\u2019s first hydrocephalus-specific Hill day since 2021, advocates had the opportunity to address the most pressing issues facing the community and share details about local events in each lawmaker’s district. Each advocate meeting emphasized the importance of federal and state programs that have the greatest impact on the hydrocephalus community, including access to lifesaving research funding and healthcare coverage.<\/p>\n Attendees met with U.S. House and Senate offices to discuss a range of issues, including:<\/p>\n For many attendees, this was their first time meeting with their elected Representatives. For some, it was their first time in Washington, D.C. The powerful stories shared by advocates represented the thousands of individuals who participate in HA WALKs, connect through community networks, and, most importantly, the over 1 million people living with hydrocephalus.<\/p>\n “Advocating in D.C. is about giving a voice to every person living with hydrocephalus,\u201d<\/em> said Betsy Conyard, Seattle WALK to End Hydrocephalus Chair. \u201cWe raise awareness about issues that directly affect our community and push for research funding so that every family living with this condition has hope for a better future.”<\/em><\/p>\n \u201cMeeting with our state’s congressional offices was an amazing experience!\u201d<\/em> said Sarah McClellan, Indiana Community Network Leader who was joined on Capitol Hill by her 13-year-old son. \u201cWe loved having the opportunity to make a difference by sharing our story, and the issues that are important to our community, with our elected officials.\u201d<\/em><\/p>\n The voices of patients are more crucial than ever in shaping lawmakers’ decisions. Events like this send a clear message to Congress: the hydrocephalus community is strong, engaged, and committed to advocating for meaningful change.<\/p>\n The Hydrocephalus Association remains dedicated to amplifying our community\u2019s voice and driving meaningful change for those affected by hydrocephalus. If you want to become an advocate, join the Hydrocephalus Action Network.<\/a><\/p>\n <\/p>\n\n\t\t\n