…times, they are a changin’
By Dawn Mancuso
“…Come senators, congressmen, please heed the call”
-Bob Dylan
July has been an incredibly busy month for the Hydrocephalus Association. In fact, it is safe to say that the word busy hardly does it justice. At the beginning of the month, we wrapped up our biennial conference on hydrocephalus in Bethesda, MD. In the middle of the month, we hosted a research conference in Seattle, WA. And now, as the month winds down, we are completing our much anticipated move to Washington, D.C. Read more
Climbing Capitol Hill for a Cure! A Day of Action
By Jennifer Bechard, Support Liaison
My first conference was at the 11th National Conference on Hydrocephalus in Cleveland OH and it certainly was an experience that I will cherish forever. Meeting world-renowned medical professionals, watching a live endoscopic third ventriculostomy (ETV) surgery, marching in a parade and hearing researchers speak about the advancements and works being made in the field were just a few highlights.
HA’s National Conference gives parents, siblings, adults and young adults the opportunity to receive further education on the condition. It is a fun, social gathering where individuals living with the ongoing challenges of hydrocephalus can meet and discover that they are not alone. The National Conference forms long, lasting bonds and friendships, which continue beyond the conference and provide support for years to come. Read more
A Season of Change
By Dawn Mancuso, HA CEO
I do not know what this winter has been like where you live, but here in the D.C. area, the winter has been much more like a lamb than a lion. Not that I am complaining, mind you, but it does mean that the trees and plants in the area are a bit confused. Crocuses blooming and trees budding in February? What will that do to our spring blooms, especially the Cherry Blossoms, which are usually so beautiful? As much as I dislike the cold of winter, I would hate to see the wonder of spring dulled by a change in weather that arrives too soon. Read more
WALKs and Special Events: Last But Certainly Not Least!
By Randi Corey, HA Director of Special Events
2011 has been a spectacular year for HA WALKs and Special Events. HA’s 2011 WALKs and Special Event season raised over $1,000,000! This is a 55% increase over last year’s total. And all of it is due to HA’s WALK Chairs and all of the volunteers who work tirelessly to raise money to further our mission of fighting this life threatening, life changing condition – and increasing awareness of hydrocephalus.
Advocacy Update: HA Points to Increased Funding but Calls for More
By Rick Smith, HA Acting CEO
As a delegation from the Hydrocephalus Association heads to Washington D.C. to participate in the September 23rd Day of Testimony, we thought we would provide you with a complete update of our advocacy efforts. First, we have just completed an in-depth analysis of investments in hydrocephalus research by the National Institutes of Health. The good news is that spending has tripled since we began our advocacy efforts in late 2004. The bad news is that with less than $10 million spent in 2010, the dollar investment per affected person is well below what it should be given the estimated 1 million Americans that suffer from the condition.
