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.
This year, the day that I am most looking forward to is HA’s 2nd Hydrocephalus Advocacy Day, “Climbing Capitol Hill for a Cure”, on Thursday, June 28, 2012. Hydrocephalus advocacy is something that I take very seriously. I feel a natural inclination to speak out about a condition that has had such a great impact on my life as well as my family’s.
Awareness plays an essential role to better understand the condition and develop more effective and reliable treatment methods. No child, teenager or adult should have to endure a lifetime of pain, suffering and surgeries. By attending and sharing your story with government officials you help us put a “face” to the condition that so greatly affects an estimated one million Americans.
Our primary goal for this year’s advocacy day is to ensure the federal government is investing adequate funds to accomplish the following:
- To understand the breadth and depth of the impact of hydrocephalus on the lives of more than one million Americans;
- To make hydrocephalus research funding a priority for improved treatments and a cure;
- To support all those affected with hydrocephalus with appropriate resources and programs.
Climbing Capitol Hill for a Cure Schedule:
Wednesday June 27
4:30-5:15pm; Advocacy Part I
Speaker: Judy Schneider
Thursday June 28
8:00am-9:45am; Advocacy Part II
Speakers: Amy Rosenbaum & John Lawrence
10:00am-11:30am; Interpersonal Connection Session
12:00 pm; buses will depart the conference site
1:00pm-4:00pm meet with our representatives
4:30pm-6:00pm Opening Reception and Award Ceremony on Capitol Hill
6:00pm- Buses depart from Capitol Hill back to North Bethesda Marriott