The Gift of a Voice

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Teens and hydrocephalusThere is no greater gift to give this holiday season than the gift of a voice to help champion the needs of families affected by hydrocephalus. For 30 years, the Hydrocephalus Association has served as the voice for one million patients, raising critical awareness and advocating for greater resources to fund research and better treatment options. Most people have never heard of hydrocephalus, let alone understand its complexity. That’s why the Hydrocephalus Association and our dedicated members are committed to getting the word out and ensuring hydrocephalus receives the attention it deserves.

You may remember our first Hydrocephalus Advocacy and Awareness Day in May 2006, when we organized visits to 98 Congressional offices by over 120 representatives of the hydrocephalus community so they could share their stories and ask for more support for hydrocephalus research. We’ve been advocating and raising awareness ever since. In 2012, we held a 2nd Advocacy Day, where this time over 200 members of the hydrocephalus community met with staff and representatives in Congressional offices. This year alone, thanks to our growing network of volunteers, we’ve also raised a record level of awareness through our WALK to END Hydrocephalus program, with 34 WALKs in 25 states raising $1.2 million and educating tens of thousands of people about the condition in the process.

We’re seeing the positive effects of moving the Association’s offices from San Francisco to Bethesda, Maryland. Now located “in the beltway,” we’re able to more effectively influence federal agencies and elected officials responsible for appropriating funding for research and access to quality care. We’re getting our foot in the door and have a place at the table where medical research funding decisions are made and coalitions are built, including the National Institutes of Health, the Department of Health and Human Services, the Department of Defense, the National Health Council, Research!America, the Rare Disease Legislative Advocates … just to name a few.

We have accomplished so much but yet there is still much to do. It will take the support of every patient, parent, family and friends to put hydrocephalus in the forefront to yield the change we want to see. There is no greater gift to give than to help HA serve as the voice for a loved one and rally national support for curing hydrocephalus.

Sincerely,

Dawn Mancuso, CEO

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