Announcing Teens Take Charge

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For Immediate Release

Teen Advocacy Program Launched for Hydrocephalus

Hydrocephalus Association Engages Teens in Fight for a Cure

San Francisco, CA (October 18, 2010) – The Hydrocephalus Association launched the Teens Take Charge initiative to engage teens in advocating for more research. The program will develop the next generation of activists fighting to find better treatments and ultimately a cure for hydrocephalus – a common brain condition affecting one million Americans.

“I am not hopeful for a cure,” says Harrison Silver. a 13 year-old New Yorker living with hydrocephalus,  “I am DETERMINED.” Harrison wants to make a difference so while preparing for his Bar Mitzvah, he decided that advocacy was key.  Advocacy plus money.  So he is learning how to become a national spokesperson, and has designated the Hydrocephalus Association as the beneficiary of his Bar Mitzvah gifts.

A million Americans have hydrocephalus.  It can strike anyone at any age.   There is no cure, and the primary treatment—brain surgery to implant a shunt that drains cerebral spinal fluid—can be terribly ineffective, with disastrous results.  Jenn Bechard,  a young intern at HA, has had 91 brain surgeries over the last eight years. She wants teens to join her as she fights to get more federal dollars allocated for hydrocephalus research.

Laurene McKillop, CEO of the Hydrocephalus Association, has four children, and knows the power of youthful energy.  “Kids are going to be a force for something, no matter what.  So let’s harness that force and have them help us find better treatments and a cure.  When you have a chronic illness, taking control of the situation is enormously helpful.”

By next June, the Hydrocephalus Association hopes to hold its first-ever Teen Advocacy workshop for young people in Washington, DC, at its soon-to-be-opened national office.  Then, these newly-minted teen advocates will take Capitol Hill by storm.  Interested parents and teens should visit the Association’s website at “Teens Take Charge” to sign up.

About the Hydrocephalus Association

Founded in 1983, the hydrocephalus association is a non-profit organization whose mission is to eliminate the challenges of hydrocephalus, a serious chronic medical condition affecting over 1 million Americans of all ages.

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4 Comments for : Announcing Teens Take Charge
    • Elizabeth Heim
    • December 27, 2010

    My name is Elizabeth Heim, and I have struggled with hydrocephalus my entire life. I have had three surgeries to correct it, and even though it doesn’t seem like many, it was emotional, for both me and my mom. For example, my mom had to tell my girl scout troop leaders about this, in case i had a seizure, and they told the rest of the girls in my troop, and they treated me as if i was as worse as Rebecca (a girl with a mental illness who is in special needs). Some of my classmates still don’t understand the concept of my condition, and that I am completely normal compared to the rest of them, except for being a little behind, physically. In fact, some of my class mates make fun of me because I can’t do a lot of things that most of them can do. For example, last year in P.E., they pulled me out of PE, to test me and see if I needed to be in PE for special need kids, which resulted in me getting a C on that assignment. Luckily, the C only affected my overall grade by one letter (I ended up getting a B). Thankfully, more people are understanding of my condition, and my teachers are respectful of me, and even admire me a little bit. I am a straight A student, and am involved in cheer and piano

    • Lydia Gonzales
    • November 4, 2010

    Hello, my name is Lydia Gonzales. I have struggled with hydrocephalus pretty much all of my life, and have already had 14 surgeries to correct it. I was very thankful to find out about this site and for the opportunity to learn about other people and their struggles with hydrocephalus.
    I certainly have had to overcome several obstacles in my life due to my condition. For example, before I started my freshman year of high school, I had to put up with constant, prolonging headaches and vomiting episodes as well as vision loss, due to a shunt malfunction, so I had to go to the hospital for an operation. Afterwards, fluid began leaking through my stitches, so I had to have another surgery. Just when I thought I was recovering, my vision began to deteriorate more and more to the point where I became totally blind. After a third surgery, I was completely bedridden since my shunt had to be externalized for the purpose of observation. I did have to have a couple of emergency surgeries afterward because I was visually hallucinating, and my shunt got clogged with a bunch of protein and fiber-related clumps from who knew what. After a final surgery, when my shunt was finally replaced, although I came down with Bell’s Palsy afterwards (temporary paralysis of half of the face), I was able to return home. It all took place within a month, but thankfully, I survived.

    • Carli C.
    • October 26, 2010

    Hi my name is Carli and I to am living in NY with hydrocephalus and am looking for teens to talk to about this condition if you would like to talk send me a message and let me know… 🙂 I hope to get to know you!!!

    • GP
    • October 26, 2010

    Hey I would like to do some hydrocephalus walks. I would like to know the dates and times for 2011 hydrocephalus walks in Maryland. I know that their is a walk in Baltimore but is their another walk somewhere in Maryland?

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