Fighting Hydrocephalus

Resources and research

By Katrina McDowell on Jul 22, 2024 in Giving

Hydrocephalus is a neurological brain condition that, currently, over one million people in the United States live with, and one out of 770 babies develops each year.

Hydrocephalus Association (HA), a Yardi-supported nonprofit, brings the community together virtually and in person through WALK and community networks. Established in 1983 in Bethesda, MD, it supports those in need, including patients, caregivers, and physicians. With an extensive list of neurosurgeons in its directory, it offers a vast library of resources that span from basic information about hydrocephalus to guides for teachers. In addition, HA provides a mobile app, HydroAssist^TM, to patients and a patient-powered registry to collect essential data for researchers studying hydrocephalus.

Currently, the Hydrocephalus Association is in the middle of a three-year strategic plan:

• Find and Engage the Hydrocephalus Community
• Fund and promote high-impact research to advance care, treatments, prevention, and ultimately finding a cure for Hydrocephalus
• Support and advocate for those impacted by hydrocephalus at every age and stage in life
• Improve the care and management of hydrocephalus patients by the medical community

Funding from Yardi helps HA meet all of these goals. From funding the talented staff needed to execute its strategy and run programs to the impactful research that is changing the future of Hydrocephalus. Hydrocephalus Association’s key component to its success is its strong and committed Board of Directors and the devoted and skilled volunteer force that partners with staff to run its programs. Most notably, all its 40+ WALKS nationwide are led by volunteer leaders with minimal staff support.

“Intense gratitude” is how Carissa Bentley and Melissa Arato, co-chairs for the Long Island WALK to End Hydrocephalus, reacted to Yardi’s support. They continued, “While every supporter matters to our progress, committed, long-term contributors such as Yardi help us get even farther and inspire other individuals and organizations to give however they can.”

Return on Investment

Over the last 14 years, HA has invested more than $14 million in hydrocephalus research. Its funded scientists and clinical networks have secured an additional $74 million from the National Institutes of Health (NIH), Department of Defense (DOD), and other foundations for a 500% ROI!

Volunteer Opportunities

The Hydrocephalus Association always seeks volunteers to help throughout the year or during WALK events. Please get in touch with Carissa at (646) 235-1419.

“These volunteer partnerships are core to HA’s success, helping us to stretch every dollar and contributing to furthering our shared mission,” they said.

The next WALK for Long Island is:

Sunday, Oct 6, 2024

Starts 9:00 am

Belmont Lake State Park

North Babylon, Exit 38 Southern State Pkwy NY 11704

Advocacy is critical for HA to continue and increase government funding of hydrocephalus research. Learn more and sign up here.

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