Get the Hydrocephalus Scoop on Capitol Hill for June 2024


Get the Hydrocephalus Scoop on Capitol Hills for June. Inspire through advocacy & uniting communities across the nation and beyond.

NPPACT CONGRESSIONAL BRIEFING

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

The speakers included:

Annie Kennedy: the Chief of Policy, Advocacy, and Patient Engagement at the EveryLife Foundation for Rare Diseases.

Dr. Erin Teeple: Pediatric and Adult Colorectal surgeon and Director of the Colorectal Transition Program at Children’s National Hospital in Washington, D.C.

Domonique Robinson: Spina Bifida and Hydrocephalus Patient Advocate

The event titled, Healthcare Transition: A Care Cliff for Pediatric Onset Conditions, brought 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’s offices. The briefing is just the beginning of NPPACT’s 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 HERE.

 

NEW CAUCUS MEMBERS

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. 

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.

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.

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 advocacy@hydroassoc.org!

SIGN ON LETTERS 

Office of Caregiver Health Support Letter

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).

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:

  • Ensuring caregivers are understood and monitored as a population with their own needs.
  • Ensuring that the needs of caregivers are considered in all federal programs and policies.
  • Leveraging research and ensuring effective program evaluation and delivery across federal agencies to recommend policy and regulatory reforms to mitigate and prevent adverse outcomes from caregiving.
  • Define caregivers and assess their needs, identify all existing programs and policies that may impact them and coordinate access to a streamlined system with a centralized
The office would provide much needed assistance to caregivers in the hydrocephalus community, of which are the backbone of our patient community. Supporting the health and mental wellbeing of caregivers is crucial for ensuring consistent and reliable care for hydrocephalus patients across the country.

PRV Reauthorization Letter of Support

The Hydrocephalus Association has joined over 130 healthcare organizations in supporting a letter by the National Organization for Rare Disease (NORD) in support of the Rare Disease Pediatric Priority Review Voucher (PRV) program. The FDA program establishes incentives for pharmaceutical companies to invest in Rare Disease treatments that may not be commercially attractive. The priority review voucher can be used to expedite FDA review of drugs that affect rare disease. The program’s expiration date in September makes the reauthorization bill (Creating Hope Reauthorization Act of 2024, H.R.7384) a large priority for the rare disease community, which some forms of hydrocephalus fall under. 

To learn more about the legislation and program, click HERE.

Be Part of the Rally for Medical Research, an In-Person Advocacy Opportunity

SEPTEMBER 18-19 RALLY FOR MEDICAL RESEARCH: IN-PERSON ADVOCACY OPPORTUNITY 

SAVE THE DATE! The Hydrocephalus Association is taking part in the Rally for Medical Research Hill Day and we want YOU to attend and advocate for the hydrocephalus community. Rally for medical research will invite patient advocates from across the country to Washington, D.C. to advocate for renewed funding of the National Institutes of Health (NIH). The NIH funds a variety of groundbreaking hydrocephalus research each year and is crucial in ensuring a cure for hydrocephalus.

HERE is a link for those already interested in signing up. Reminder, Rally for Medical Research is an IN-PERSON event in Washington, D.C. We will be publishing information on financial assistance soon. ATTEND OUR ADVOCACY MEETUP TO HEAR MORE ABOUT THE OPPORTUNITY! Those who are interested to learn more, please reach out to davis@hydroassoc.org.

July 25-27 18th National Conference on Hydrocephalus – HA CONNECT  

HA CONNECT, the world’s largest conference on Hydrocephalus, takes place this July in Tampa, Florida. Come get insights into living our best lives with hydrocephalus through interactive sessions, expert speakers, evening events & more! Registration is open. Visit www.hydrocephalusconference.org to learn more.

July 3 Hydrocephalus Advocacy Update THIS WEDNESDAY 

Be sure to visit our awesome Advocacy Center and take action on our legislative alerts. We need to ensure that Congress is hearing us loudly! Want to deep dive into these issues? Don’t forget to join us for our next Advocacy Update July 3rd at 7 pm eastern. If you haven’t signed up yet, click here to register.

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