HA Visit To Capitol Hill Yields Insights into Hydrocephalus Research Funding

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By Paul Gross, HA Chairman Board of Directors

HA had a very productive day on Capitol Hill last Friday. Our day began with a meeting with the staff of the Armed Services committee to explore the funding opportunities for hydrocephalus in the Congressionally Directed Medical Research Program (CDMRP) and the Defense Appropriations for Traumatic Brain Injury. I was joined by Sergeant James Spence of the 191st Infantry Brigade out of Fort Lewis, Washington who has hydrocephalus after two tours of duty in Iraq; Dr. Michael Williams, Director, Sandra and Malcolm Berman Brain & Spine Institute; and our incoming CEO, Dawn Mancuso.
We were given good leads on how to pursue our funding objectives. Next, we participated in the Day of Testimony. We had a great set of speakers, from patients and advocates to medical professionals including neurologists, neurosurgeons and a neuropsychologist. All in all, the program was a good initial effort to raise awareness on Capitol Hill. In the afternoon, we had meetings with Representative Rosa DeLauro’s staff, the Energy and Commerce committee staff and the minority speaker’s staff. Each visit gave us insights into how to move forward with our agenda in these challenging economic times. We got a tough reality check, learning that specific disease research funding was highly unlikely in the current ‘deficit reduction’ climate. But everyone gave us hope and new angles to pursue. We were reminded that we need to be in this for the long haul and we are! With the appointment of our new CEO, who will be based in Washington, we are prepared to engage on multiple political and legislative fronts to bring attention and funding to the cause of hydrocephalus.

8 Comments for : HA Visit To Capitol Hill Yields Insights into Hydrocephalus Research Funding
  1. Reply

    Maria,

    After I said “I’d like to here more about being forced to retire”, it occurred to me that maybe she was using the term not to say that someone made her retire but in the sense that her condition made it somewhat impossible for her to continue her work. I think I misunderstood her.

    Sheila

    • maria yardley
    • October 21, 2011
    Reply

    does age has anything to do with it?

    • maria yardley
    • October 21, 2011
    Reply

    so you were allowed to fight for you country and get killed, but you cant deliver the mail?

    • Vicky Rose
    • October 1, 2011
    Reply

    I’m glad

  2. Reply

    First I’d like to say boy I’d like to hear more about being forced to retire from the Postal Service.

    Anyway, it sounds like great progress was made and I was wondering if any funding generated from the visit will help with JUST the study of adult onset hydrocephalus or will the funds extend to research on hydro as a birth defect?

    Sheila, Washington State

    • Duncan Griz Salloway
    • September 30, 2011
    Reply

    I want to say thank you to all the people who are working to solve the problem with Hydro. I also have the condition and I suffer in extreme pain everyday.

    Thanks again Duncan

    • Elisabeth Sundoy
    • September 27, 2011
    Reply

    Hi in America!
    I want to say a heartfelt thank you to all the people in the USA who are are putting in such a great effort to enable research in the field of Hydrocephalus to continue. Your work is really highly needed and necessary – not only for the Hydrocephalus people living in the USA, but for people suffering from this disease all around the World. Small countries like Norway benefits greatly from the work you are doing, and I, as a mother, am really full of thank to be able to follow your work through the HA Alerts.
    Elisabeth Sundoy, Kristiansand, Norway.

    • Cloyd Winner
    • September 26, 2011
    Reply

    I have congenital Hydrocephalus and served 24 years in the United States Air Force and was honorably discharged in 1990. I was forced to retire from the US Postal Service because of the Hydrocephalus.

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