It’s Time for a National Hydrocephalus Registry

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Hydrocephalus Action NetworkIf you want your representative in Congress to support the hydrocephalus community, now is the time to urge them to do it. One of our biggest legislative champions, Representative Chris Smith (R-NJ), has introduced the Advancing Research for Hydrocephalus Act (H.R.2313), which would establish a national hydrocephalus registry. This registry would help us better understand the condition within our population and help to inform decisions around research, which is essential to finding treatment options – and, one day, a cure(s).

If this sounds like an initiative you believe in, then it’s time to help make it happen. In order to move forward, other members of Congress need to show support for this bill. But with thousands of bills introduced every year, legislators don’t always know what’s important to the people they represent. That’s where you come in. They need to hear from you, their constituents.

Your voice is important. An advocate from Washington, D.C., heard last week that her congresswoman, Representative Eleanor Holmes Norton (D-DC), is signing on to co-sponsor H.R.2313. Why? Because she asked!

On the Hydrocephalus Advocacy page, you’ll find everything you need to ask your legislators one simple question: Will you co-sponsor Representative Chris Smith’s bill, the Advancing Research for Hydrocephalus Act? Taking just a few minutes to get involved in the policy process can make a lifetime of difference for those living with hydrocephalus.  So let’s take action today!

For more on this legislation and how to further your connection with your legislator, sign up for our upcoming webinar on April 28th from 2:00 to 2:30 pm. We’ll show you how to follow-up on this ask to ensure you’re not just heard, but agreed with.

NOTE: If you have already signed up to be a part of the Hydrocephalus Action Network (HAN), thank you! You are on our email list to receive action alerts, like this blog post, as well as other advocacy-related updates and calls to action. If you have not yet had a chance to sign up, please register for HAN here: Join the Hydrocephalus Action Network!

CLICK HERE to visit our Advocacy Page to help support H.R.2313.

2 Comments for : It’s Time for a National Hydrocephalus Registry
    • Imari D
    • October 7, 2017

    Can’t wait to walk with you guys

    • Andrea Anderson
    • April 21, 2016

    Please support the hydrocephalus community.

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