By Dawn Mancuso, HA CEO
A very famous author from across the pond (hint: “…that which we call a rose by any other name would smell as sweet”) once asked “What’s in a name?”
As I travel to meetings on behalf of the Hydrocephalus Association (HA), and as I talk to more and more people affected by hydrocephalus, my conversations always circle back to one common theme: the need for more research on the condition. These conversations have made me stop to ponder just what do we mean by the word “research” and how should HA best serve this goal?
The Merriam-Webster dictionary actually has three distinct meanings for the word research:
re•search noun or verb /ˈrēˌsərCH/
- Careful or diligent search.
- Studious inquiry or examination; especially: investigation or experimentation aimed at the discovery and interpretation of facts, revision of accepted theories or laws in the light of new facts, or practical application of such new or revised theories or laws.
- The collecting of information about a particular subject.
While most people I talk to mention “research” the noun, I am struck by the significance of the action described in each of these definitions.
I am proud to say that we, as a community and an organization, have recognized the action inherent in this word, and have committed significant resources to undertake action in this area. HA’s upcoming report, ‘The Research Initiative, Delivering on a Promise’, details the Association’s progress to date on its Research Initiative. This report will be posted to our website after its release.
- Identification of the outstanding challenges in hydrocephalus research.
- Establishment of a 5-year plan.
- Expansion of our efforts to stimulate the research ecosystem – through our provision of grants to Mentored Young Investigators (MYI’s), our hosting hydrocephalus-focused research conferences, our expanded engagement with the National Institute of Neurological Disorders & Stroke (NINDS) at the NIH, our support of the Hydrocephalus Clinical Research Network (HCRN), our funding of grants to established investigators doing basic science research on the causes of and factors related to hydrocephalus, and our recent work to establish an Adult HCRN.
- Launch of a research-focused fundraising initiative to help us support and expand this important element of our mission.
Successful outcomes for an undertaking of this kind can best be measured on a long-term horizon, but we are proud to report that much progress has already been made. Three of the recipients of HA’s MYI grants have applied for NIH grants, and four additional grants are being developed (although not yet submitted). HA-funded research has resulted in 20 scientific presentations at professional meetings, four publications in peer-reviewed journals, and an additional three manuscript submissions for publication. Evidence produced and disseminated by HA’s research partners at HCRN has proved to reduce post-surgical shunt infections by more than 35% across their institutions, promising 2500 fewer brain infections related to shunt surgeries, and a savings of $74 million to payers nationwide in five years alone.
The Hydrocephalus Association believes that the word research is an active verb, requiring action by everyone to advance the treatments available for patients suffering from the effects of hydrocephalus, and eventually to find a prevention and/or a cure.
How about you? What action are you taking to help our community meet this goal? Please consider making a donation today to help us keep this crucial work moving forward. You can make a donation by clicking here.