Amo, Magaziner Unite to Join Pediatric and Adult Hydrocephalus Caucus

WASHINGTON, DC – Today, Congressman Amo (RI-01), alongside Congressman Seth Magaziner (RI-02), proudly announced their membership in the Congressional Pediatric and Adult Hydrocephalus Caucus. 

“I am excited to join the Hydrocephalus Caucus and work with my colleagues to support research into innovative treatments and a long-term cure," said Congressman Gabe Amo. “I want to thank Nikki, a Rhode Islander from Johnston, for partnering with my office on this important issue. I look forward to raising awareness of hydrocephalus and working to support the over 1 million Americans living with the condition.”

Membership in the Adult Hydrocephalus Caucus will allow Congressman Amo to support issues that hit close to home for Rhode Island hydrocephalus patients. As an advocate for increased awareness, funding, and support for pediatric and adult hydrocephalus patients, Congressman Amo is committed to amplifying the voices of constituents and Rhode Islands who have the condition. Among these is Nikki Batsford who has been living with hydrocephalus her entire life. Nikki recently met with both district offices in Rhode Islands to share her personal story with the illness.

“We’re thrilled to welcome both Congressmen Amo and Magaziner to the Pediatric and Adult Hydrocephalus Caucus,” said Diana Gray, President and CEO of the Hydrocephalus Association. “It's fantastic to see both Congressmen joining the Caucus, effectively representing the entire hydrocephalus community in Rhode Island and their need for critical research and improved treatments.” 

“One million Americans live with hydrocephalus, and Congress must work together to help those facing this life-threatening condition,” said Congressman Seth Magaziner. “I’m joining the Congressional Hydrocephalus Caucus to support research and advocate for Rhode Islanders and people across the country living with this condition.” 

BACKGROUND
Hydrocephalus affects over 1 million Americans. The only known treatment for hydrocephalus is brain surgery. Anyone at any time can develop the condition from a traumatic brain injury, brain infection, tumor, or, for unknown reasons, as part of the aging process. One in 770 babies develop hydrocephalus each year. Over 800,000 seniors in the U.S. are estimated to have normal pressure hydrocephalus, though the majority are undiagnosed or misdiagnosed as having Alzheimer’s or Parkinson’s. The most common surgical treatment for hydrocephalus is the placement of a shunt to drain excess cerebrospinal fluid from the brain, which has one of the highest failure rates of any medical device on the market. There are approximately 10,000 pediatric hospital admissions for shunt malfunctions each year. Hydrocephalus and a shunt can mean a lifetime of multiple brain surgeries. Dozens of brain surgeries are common and 100 or more is not unheard of.

The Caucus serves to inform the congressional community about the needs of those living with hydrocephalus, their families, and caregivers. This includes funding for research from the National Institutes of Health and Department of Defense and other key health policy priorities impacting the community such as Medicare and Medicaid access, special education, and rehabilitation services. 

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