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
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
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
We are honored and thrilled to report that Dr. Story C. Landis, the distinguished Director of the National Institute for Neurological Disorders and Stroke (NINDS), will be a keynote speaker at the Hydrocephalus Association’s 12th National Conference on Hydrocephalus: Getting to The Heart of Hydrocephalus. Dr. Landis will address the importance of hydrocephalus research and how this research fits into NINDS’ mission.
Story Landis, Ph.D. has been Director of the National Institute for Neurological Disorders and Stroke (NINDS) – one of the institutes that comprises the National Institutes of Health (NIH) and the largest funder of brain research – since 2003. A native of New England, Dr. Landis received her undergraduate degree from Wellesley College (1967) and her Ph.D. from Harvard University (1973). After postdoctoral work at Harvard University, she served on the faculty of the Department of Neurobiology there. In 1985, she joined the faculty of Case Western Reserve University School of Medicine, where she created the Department of Neurosciences which, under her leadership, achieved an international reputation for excellence. Throughout her research career, Dr. Landis has made fundamental contributions to the understanding of nervous system development. She has garnered many honors, is an elected fellow of the Institute of Medicine, the Academy of Arts and Sciences, the American Association for the Advancement of Science, and the American Neurological Association, and in 2002 was elected President of the Society for Neuroscience. Read more
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.
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, Eddie and Hannah, appear in the ‘kidswishnetwork’ blog after meeting their celebrity heroes.
By: Desa Merila
My story is strange, I have hydrocephalus but it has not been a big part of my life. It has been ignored. Finding the Hydrocephalus Association’s Teens Take Charge (TTC) program has helped me to understand what I need to do. My family always felt, “if it ain’t broke don’t fix it, if nothing is wrong do not worry.” So, my hydrocephalus was forgotten. On one hand I feel lucky because I did not have any major problems or had to endure another surgery to revise my shunt in the past ten years. On the other hand, this has led to my complete misunderstanding of how serious hydrocephalus can be.
In my family, hydrocephalus was simply a word because I was not having any problems. I was not the focus. My twin sister, Michelle, was born minutes after me. My parents were not expecting a multiple birth because all of the ultrasounds done on our mother showed only one baby, me. For the past 18 years, Michelle has been the main focus because she has been in and out of the hospital with over 40 surgeries, including leg reconstruction and the removal of her thyroid.
I found TTC while I was doing a research paper about hydrocephalus for my college Medical terminology class. I chose the subject because I wanted to understand what hydrocephalus meant in my life. Since discovering TTC I feel more confident about my medical background. I know what this condition is and how to handle it. Within the next few weeks I will be visiting the neurosurgeon for the first time in ten years, and even if I need a shunt revision I am prepared for what this means, because I now have a support group of understanding people through TTC.
The largest disappointment hydrocephalus brought to my life is the fact that I am not allowed to join the Navy Nurse Corp. I have wanted to serve my country. This tears me up inside. Instead, I am going to school to become a nurse. After this I hope to become an orthotics technician as well. I want to help design braces for people with Cerebral Palsy (CP) because I also suffer from a mild version of CP and wear an Ankle-Foot Orthotic (AFO) as a result. For me, education is the key to my success. I want to get many degrees that focus on helping people. My disabilities will not hold me back.
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