{"id":35137,"date":"2024-07-01T10:56:42","date_gmt":"2024-07-01T14:56:42","guid":{"rendered":"https:\/\/www.hydroassoc.org\/?p=35137"},"modified":"2025-05-28T15:17:23","modified_gmt":"2025-05-28T19:17:23","slug":"get-the-hydrocephalus-scoop-on-capitol-hill-for-june-2024","status":"publish","type":"post","link":"https:\/\/www.hydroassoc.org\/get-the-hydrocephalus-scoop-on-capitol-hill-for-june-2024\/","title":{"rendered":"Get the Hydrocephalus Scoop on Capitol Hill for June 2024"},"content":{"rendered":"
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Get the Hydrocephalus Scoop on Capitol Hills for June. Inspire through advocacy & uniting communities across the nation and beyond.<\/h3>\n
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NPPACT\u00a0CONGRESSIONAL BRIEFING<\/span><\/strong><\/span><\/div>\n<\/div>\n

The Hydrocephalus Association<\/a> (HA) recently partnered with the Spina Bifida Association<\/a> (SBA), Arthritis Foundation<\/a>, Tourette Association of America<\/a>, and the National Partnership for Pediatric to Adult Care Transition<\/a> (NPPACT) to host a Capitol Hill Briefing centering on pediatric to adult healthcare transition.\u00a0<\/span><\/span><\/span><\/span><\/p>\n

The speakers included:<\/strong><\/em><\/p>\n

Annie Kennedy<\/strong>: the Chief of Policy, Advocacy, and Patient Engagement at the EveryLife Foundation for Rare Diseases<\/a>.<\/p>\n

Dr. Erin Teeple<\/strong>:\u00a0Pediatric and Adult Colorectal surgeon and Director of the Colorectal Transition Program at Children\u2019s National Hospital in Washington, D.C.<\/a><\/p>\n

Domonique Robinson<\/strong>: Spina Bifida<\/strong> and Hydrocephalus<\/strong> Patient Advocate<\/p>\n

The event titled,\u00a0Healthcare Transition: A Care Cliff for Pediatric Onset Conditions<\/strong>,\u00a0brought in OVER 50 ATTENDEES. This is a direct result of the hard work of advocates like yourself. Thank you to each person who called and flagged this for their Representative\u2019s offices. The briefing is just the beginning of NPPACT\u2019s<\/strong> congressional advocacy. We are looking forward to working with fellow patient organizations to push this issue to the forefront in Congress. To learn more about NPPACT and the briefing, click\u00a0HERE<\/a>.<\/p>\n

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NEW CAUCUS MEMBERS<\/span><\/strong><\/span><\/p>\n

The Congressional Hydrocephalus Caucus welcomed Congressman Ted Lieu (CA-36) as its newest member in June. Representative Lieu has a long history of supporting effective healthcare initiatives.\u00a0<\/span><\/p>\n

Freshman Congresswoman Brittany Pettersen (CO-07) was the second member to join the Caucus. She is the second member of the Colorado delegation following Representative Caraveo’s (CO-08) addition last month.<\/p>\n

Congressman Don Bacon (NE-02) was the third member of the month to join the Caucus. Representing the Omaha Walk to End Hydrocephalus, he becomes the first member from the Nebraska delegation.<\/p>\n

This brings total membership to 31 MEMBERS! The continued Caucus growth is a direct result of courageous advocates spreading hydrocephalus awareness across the country. To join our efforts and help your members join the Caucus reach out to\u00a0advocacy@hydroassoc.org<\/a>!<\/p>\n

SIGN ON LETTERS\u00a0<\/span><\/strong><\/span><\/p>\n

Office of Caregiver Health Support Letter<\/strong><\/p>\n

The Hydrocephalus Association has joined over 160 organizations in singing onto a letter by our partners at the Rosalynn Carter Institute for Caregivers. The letter urges the White House to establish a federal Office of Caregiver Health within the Department of Health and Human Services (HHS).<\/span><\/span><\/p>\n

The office would create collaboration across agencies to advance the health and wellbeing of caregivers including support, research, and education. As detailed in the letter, function of the office include:<\/p>\n