Ever Wonder What it’s Like to Be Part of a Hydrocephalus Conference?
Watch the highlights from our last conference on hydrocephalus, which took place in Cleveland, OH in 2010. We invite you to register for the upcoming 12th National Conference, which will be held in Bethesda, MD from this June 26th through July 1st.
Huffington Post Again Shines the Light on NPH
Huffington Post columnist Marie Marley shines a further light on Normal Pressure Hydrocephalus (NPH) and tells the stories of Alicia Harper and Jimmy Nowell. Originally misdiagnosed, they were both finally able to receive a successful and accurate diagnosis and find relief from their symptoms by shunt placement.
Click here to read the full article.
re•search /ˈrēˌsərCH/
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? Read more
New Braunsfels, Texas Woman Featured by Local NBC Affiliate
Sheri Burdine, the founder or Hydroangelsovertexas, is dedicated to spreading the word about hydrocephalus. Due to her tireless efforts on behalf of the hydrocephalus community, she was awarded the Jefferson Award which is given to people who go above and beyond to help others. Her story was featured by a local NBC Affiliate.
Watch the video here:
There are a million reasons to walk….HA WALKs Update!
By Randi Corey, HA Director of Special Events
New WALK Chair’s Training Meeting:
In February Hydrocephalus Association held the 2nd annual training meeting for HA’s New WALK Chairs in Charlotte, NC. New Chairs included Shawn and Julie Robinson (starting a new WALK in Northern Kentucky/Cincinnati), Genia Hastings and Melissa Arsenault (taking on a new WALK in Nashville), Margaret Powers (starting a Houston, Texas WALK), Patti Lampien (re-starting a dormant Wisconsin WALK), Dan and Sara Naragon (new Chairs for our established Greater Detroit area WALK) and Christy Ruth (who hopes to start a WALK in Charlotte, NC next year if she can recruit some help.) Also joining us for the 2-day meeting were “New Chair Mentors,” Mia Padron (HA’s Long Island WALK Chair) and Phyllis Rogers (our Denver WALK Chair.) Phyllis and Mia have volunteered to serve as mentors for all of our New Chairs – giving them the benefit of their vast experience with HA WALKs! I think it’s safe to say that a good time was had by all – while at the same time everyone buckled down and did some serious work – learning all about coordinating a HA WALK. There are a lot of components and moving parts for your local WALK to be successful and HA wants all of its volunteers to get off to a great start! Read more
Meet Teens Take Charge (TTC) Council Member: Madison
By: Madison Pardi
Hi, my name is Madison and I am 14 years old and a freshman in high school. I was diagnosed with hydrocephalus when I was 10 weeks old. I have had 5 surgeries and my last shunt revision was 11 years ago.
When I was a baby I crawled and walked later than everyone else my age and had physical and occupational therapy, but now I row on the weekends, I like to swim and I do hip hop dancing. I have been horseback riding for many years and now I also volunteer at a horseback riding stable for people with different disabilities. Read more
12 National Conference on Hydrocephalus: Travel Tips
As you make your way to the 12th National Conference on Hydrocephalus in Bethesda, MD, here is some information to help you plan your trip. Read more
NPH Featured in the Huffington Post
Columnist Cynthia R. Green, PhD talks about Normal Pressure Hydrocephalus and relates the story of her mother-in-law’s struggle to achieve an accurate diagnosis.
Click here to read the full article.
Louisville, KY Family’s Hydrocephalus Story in the Louisville Special Needs Kids Examiner
Holly and Issac Frasure tell their story of how they learned about their daughter, Evie’s hydrocephalus, and the profound effect it has had on their new family.
Read the full article, “Hydrocephalus and its Effects on a Family.
Two Children with Hydrocephalus Meet their Heroes
Two children with hydrocephalus, Eddie and Hannah, appear in the ‘kidswishnetwork’ blog after meeting their celebrity heroes.
