Transforming Science.
Improving Lives.

2021 Annual Report

Message from the President/CEO

Diana Gray, MA

President and Chief Executive Officer
Hydrocephalus Association

Brett Weitz

Chair, Hydrocephalus Association Board of Directors

"It has truly been a pivotal year for our community as we adapt and evolve for a better future. With your help, the Hydrocephalus Association was able to fund groundbreaking research to get us closer to a cure as well as improved treatment options. Transforming science, improving lives, and never settling. On behalf of HA’s Board of Directors, thank you so much for your continued and generous support."

Research

We are focused on improving lives now and funding the breakthrough research of tomorrow.

2021 was an important year for our Research Program because we exceeded the $13 million mark for our total Research Program spending. This $13 million investment has helped advance hydrocephalus research in incredible ways, allowing us to support 3 research networks and to award 47 grants to brilliant scientists who are exploring new treatments and pathways to a cure. Today, thanks to our generous supporters, we are the largest, private funder of hydrocephalus research in the country.

Learn More About Our Research >

Scientists Awarded Grants to Expand Our Knowledge on Hydrocephalus

AHCRN Awarded $14M NIH Grant to Study Shunt Treatment for NPH

Nurturing Future Researchers

$13 million+

Preclinical Drugs Tested

11

total grants awarded to scientists

47

people have joined HAPPIER, our Hydrocephalus Patient Registry

810

secured in Additional
Funding by HA Researchers

$50 million

Support & Education

Providing resources and support to help you on your journey with hydrocephalus.

For over 35 years, we’ve been the place our community turns to when they need guidance or have questions about hydrocephalus. Whether it's by providing support through our Helpline, offering free educational resources, or fostering meaningful connections through our Community Networks, helping our community is what we love to do. In 2021, we continued to be a source of hope and information for those impacted by hydrocephalus.

Learn More About Our Support & Education Efforts >

New Website Launched to Help Community Thrive

Expanding Our Online Learning Opportunities

Academic Scholarships Awarded to 13 Young People

2,500

HA Community Network virtual social gatherings and educational meetings

170

HA Community Networks

49

Doctors in HA’s
Physicians Directory

575

WALK to End Hydrocephalus

Every year, people across the country come together to connect with their peers, raise funds for a cure, and celebrate the hydrocephalus community at a WALK to End Hydrocephalus. After holding online WALKs in 2020, our community was able to come together again for in-person WALKs across the country.

Learn More About Our WALKS >

2021 WALK to End Hydrocephalus Raises Over $1.6 Million

Top Ten WALK to End Hydrocephalus Sites

41 Walks

helped raise money at a walk

734 Teams

people registered for a WALK

5,487 People

Raised for Hydrocephalus research, support & education

$1.6 Million

Mia Padron

Long Island WALK to End Hydrocephalus Chair

Volunteer Highlight

Mia Padron began volunteering for the Long Island WALK to End Hydrocephalus in 2005. Thanks to her passion and dedication, the Long Island WALK has raised over $1.2 million for the Hydrocephalus Association.

“It was January 2004 when we got that life changing call with a diagnosis of hydrocephalus for Tyler. It was a feeling of defeat, not knowing what to expect in this new ‘normal’ we had to get used to. I started my volunteer journey in 2005 with the Long Island, NY Hydrocephalus WALK to learn more about this condition and meet others living the same hydro life as us. I wanted to help make a difference for my son Tyler,”

“I continued volunteering and started co-chairing the Long Island WALK in 2008 with Jackie Davidson because we needed change and HA continued to have that vision of change in the world of hydrocephalus. They started to fund research grants, and build their education and support to amazing levels. My reason for being so involved is for my one in a million, my son Tyler and for the million plus others living with this condition. I am so proud and honored to have been a part of the HA family and look forward to continuing my support of them.”

— Mia Padron

Advocacy

The Hydrocephalus Association is the leading voice for the hydrocephalus community on Capitol Hill, successfully fighting for legislation that increases federal research dollars for hydrocephalus and improving the lives of those living with the condition.

Learn More About Our Advocacy Efforts >

Hydrocephalus Once Again Receives Research Funding by the Department of Defense

HA Holds Virtual Hydrocephalus Day on Capitol Hill

New Members Join Congressional Hydrocephalus Caucus

The Hydrocephalus Association has earned high marks from the GUIDESTAR, CHARITY NAVIGATOR, AMERICA’S BEST CHARITIES and the NATIONAL HEALTH COUNCIL. See all of our Charity Ratings. For more on our financials, visit our website

Thank You to Our Sponsors

Leadership

Medical Advisory Board

Board of Directors

HA Staff

Connect with Us!

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The Hydrocephalus Association depends on concerned individuals like you to help us raise funds to support critical research and programs that improve the quality of life for people living with hydrocephalus and, ultimately, find a cure.

Transforming Science. Improving Lives.