Delivering on a Promise

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dawn mancusoIn the last year, we have talked a lot about the need for more research on hydrocephalus and the work of the association to raise money and provide funding for that research. There’s good reason for this…we’ve made good progress on our promise to increase the amount of research being done, with the ultimate goal of eliminating the challenges of hydrocephalus.

One strategy for delivering on this promise has been the vision of HA’s board to
build a strong presence in our nation’s capital, seat of the U.S. Congress and offices of the National Institutes of Health (NIH), two of the primary decision-makers around public funding of health-related research. Those of you who have read my blogs this summer know that we have made significant progress on this vision as well: for instance, we moved into new offices in Bethesda, Maryland (a suburb of Washington, D.C.) in August; we held a very successful Advocacy Day in concert with the National Conference on Hydrocephalus in June; and we have the great honor of having the Chairman of our Board, Paul Gross, named to the National Advisory Neurological Disorders and Stroke Council, the advisory council for the NIH’s National Institute of Neurological Disorders and Stroke (NINDS).

We reached another milestone in our progress just last week that I am very excited to share with you. Paul led a discussion among a broad group of representatives from four different Institutes within the NIH – the NINDS, the National Institute of Child Health and Human Development (NICHD), the National Heart, Lung & Blood Institute, and the National Institute of Biomedical Imaging and Bioengineering (NIBIB). Called the “Trans-NIH Hydrocephalus Meeting,” and led by Jill Morris, PhD, NINDS Program Director for Neurogenetics (which includes hydrocephalus), the gathering provided an opportunity for Paul to educate key officers within NIH about what our association is doing to advance research in the private arena and for Dr. Morris to share what NINDS, as one institute, has been doing to support hydrocephalus research. The meeting also provided an opportunity for Paul to share the findings of a study HA has been working on that shows how much NIH has been spending on hydrocephalus research in the last 10 years, pointing out that funding has actually decreased in the last two years. To see a copies of Paul’s presentation, click on the presentation name below:

These presentations resulted in some very frank discussions about the outlook for future research funding in light of federal budgetary challenges, what resources exist within NIH to assist researchers, and what more the Hydrocephalus Association could be doing to better prepare researchers focusing on hydrocephalus to be good candidates for federal research grants. Feedback from this meeting will be very useful to our Board and our Research Committee in setting direction for the association’s research initiatives.

The Hydrocephalus Association had a number of representatives also taking part in this meeting. In addition to Paul, HA CEO Dawn Mancuso and Board members David Browdy, Aseem Chandra, Barrett O’Connor, and Marvin Sussman participated.

Each and every day, we strive to deliver on our promise on behalf of everyone living with the challenges of hydrocephalus. We’re honored to do this work, and we thank you for your continued support in helping us meet this promise!

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