Hydrocephalus Teens Take Charge – Wyatt Speaks Up!
By Wyatt Edward Barris
My name is Wyatt Edward Barris, I was born with hydrocephalus. When I was twenty days old, I had my first shunt placement surgery. I have a vp shunt. The surgery went well and I had no problems at all after that other than a few surgeries. I have no other medical conditions besides hydrocephalus. I feel lucky for this because I have seen people and kids my own age that are much worse off than I am. I always think to myself why am I so lucky? I don’t deserve to be. I also see incredible strength when I look at people that are worse than I am because they have a much larger burden to carry then I do. Read more
Long Island WALK Chairs Featured in Newsday
HA WALK chairs, Jackie Davidson and Mia Padron were featured in the September 29th edition of Newsday. To read more about these fantastic mom’s and their efforts to raise awareness and funds for hydrocephalus, please click here.
Meet the Hydrocephalus Association’s New Research Associate
By Rick Smith, Acting CEO
We are extremely pleased to have Gavin Reed join the Hydrocephalus Association staff as our Research Associate. For the past two and a half years, Gavin has been a part of the pediatric neurosurgery research team at Children’s Hospital of Alabama in Birmingham. During that time, he helped evaluate treatments and patient outcomes relative to several different neurological diseases, chiefly epilepsy and hydrocephalus. For several months, Gavin worked to gather data and enforce surgical protocol for the Hydrocephalus Clinical Research Network (HCRN). Read more
HA Visit To Capitol Hill Yields Insights into Hydrocephalus Research Funding
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. Read more
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.
Hydrocephalus Teens Take Charge – Megan Speaks Up!
By Megan Rivkin
I’d never heard of hydrocephalus until Brady was born. It was primarily because I was five, but without Brady, I don’t think a single one of my 13-year-old friends would know about it now. It’s amazing how something can make such a dramatic imprint on a person’s life and their loved ones, while almost everyone they know can’t even spell it- let alone have more than a tiny tidbit of information on it. It did not really made a difference to me for a long time- oh, mommy’s just having one baby instead of two, the baby’s just purple-y, it just happens to remind me of a turtle. And then later, oh, he just happens to be a year behind in school, and got funny haircuts.
I always knew Brady had something special about him, but it never really affected me. I’ve been to two Hydrocephalus walks in the past few years, and I saw others just like Brady, but it didn’t seem like too big a deal. After all, there weren’t that many people there; and hydrocephalus didn’t impair Brady from being an excellent reader, and good at math. Yes, it could be scary and a pain, but it didn’t seem extremely life changing.
For my Bat Mitzvah project, I immediately thought to ask for donations to a worthy charity in place of gifts. I quickly decided on the Hydrocephalus Association. It affected my own family, so it seemed perfect. I found out about “Teens Take Charge” and the 2012 conference from my parents and immediately got excited and started setting up a page. Through the site I was able to read stories about others with hydrocephalus- and was shocked. Some people went through so many revisions, I could hardly believe it. I realized how lucky Brady was, and how much the association needed the money. I started to raise money and awareness whenever possible. I raised $6,427.00 for the Association through my Bat Mitzvah and a temple bake sale that I helped organize. To complete a Bat/Bar Mitzvah, one must read from the Torah. My Torah portion was about everyone coming to do their part, and with everyone’s special contributions put together, a big change could be made. I knew I was doing my part. I was very proud, and it made my milestone much more meaningful to me.
A girl contacted me on Facebook near my Bat Mitzvah. She told me that she had found me on the Teen’s Take Charge site, and also had hydrocephalus. She lived in a town very near to mine, so we hung out one day after school and talked about life, school, and of course hydrocephalus. She told me about how she had another friend living in New York with hydrocephalus, who had to have many revisions. She also said something to me that I will never forget; ‘It’s amazing how one thing can bring so many people to work together on something.” I think she’s completely correct. With everyone working together on Teens Take Charge, I think we can really make an impact, especially this summer in D.C. Until then, I will keep working on earning money through craft fairs, and attempting to arrange fundraisers at school, as the National Junior Honor Society President. We are the new age of hydrocephalus, and with each of us bringing something special we can work together to make a huge impact.
HA Chairman Featured in Xconomy.com
by Tom Smith
Paul Gross, HA’s Board Chairman and former Microsoft senior executive, was asked to contribute a blog to Xconomy.com regarding his recent appointment to the National Institute of Neurological Disorders and Stroke (NINDS) advisory council. Read more
HA WALK Chair Featured by KMGH Denver
ABC Channel 7 featured a story about Denver WALK Chair Phyllis Rogers.
Please click here to read the text
HA Chairman, Paul Gross, Joins NINDS Advisory Council
By Rick Smith, HA Acting CEO
I am pleased to announce that Paul Gross, Chairman of Hydrocephalus Association’s (HA) Board of Directors, has been selected to join the 18 member National Advisory Neurological Disorders and Stroke Council -the major advisory panel to the National Institute of Neurological Disorders and Stroke (NINDS). Paul joins three other new members and brings to the Council his entrepreneurial perspective, successful business experience, and a deep, passionate commitment to finding answers for people living with hydrocephalus. Read more
Imagine No Hydrocephalus
by Rick Smith, HA Acting CEO
As we put the final touches on our five year Research Initiative Plan, we wanted to find an additional way to convey our hope for the impact of increased hydrocephalus research. We were going to release this video with the plan but because September is National Hydrocephalus Awareness month, and with the exciting news that came out last week about Dr. Chun’s research on hydrocephalus, we decided to share it early. As we set our sights on our mission to eliminate the challenges of hydrocephalus, we think this video offers a powerful expression of our vision – a future with no hydrocephalus.
