Advocacy

Update on Pre-Existing Condition Insurance Plans

The following information was kindly brought to our attention by the National Health Council (NHC) and Janet Miller, MPA on behalf of the Centers for Medicare & Medicaid Services. As you know, the Affordable Care Act (ACA) created the Pre-Existing Condition Insurance Plan (PCIP), which will offer health insurance coverage for people with chronic conditions […]

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A Day of Hydrocephalus Support, Education and Fun at the Oakland’s Children’s Hospital

Last month we were excited to take part in the local Oakland Children’s Hospital hydrocephalus festival in California. Each year, Sue Ditmyer, RN, CNP and her medical team organize a daylong event for patients and their families affected by hydrocephalus.     This year’s event featured a visit from the local Oakland Zoo! In addition […]

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Veteran Hydrocephalus WALK Chairs Training – A Meeting of Minds

by Pip Marks, HA Director of Support and Education Empowered patients are those who become active members of their healthcare team. Obtaining and keeping copies of your medical records including images (CT scans and MRIs) is good advice for any person receiving medical attention. For those who have hydrocephalus or other chronic conditions, it is […]

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Veteran Hydrocephalus WALK Chairs Training – A Meeting of Minds

By Jenna Ellis, Co-Chair of HA’s Detroit, MI WALK In the past, (hydrocephalus) WALK Chairs have gotten to know each other through emails and brief encounters at conferences. There was always a feeling that more time was needed to talk about WALK.  This year veteran WALK Chairs from all over the United States gathered in […]

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New Hydrocephalus WALK Chair’s Training Meeting – A Study in Dedication and Commitment

By Randi Corey, HA Director of Special Events On Saturday, Feb. 26th at 8:30 am, I stood looking across the room and saw 13 volunteers of all ages, ethnicities, and backgrounds looking back at me expectantly. They had come from cities all across the nation to be here.  Many of them overcoming airline delays and […]

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Brain Awareness Week: Part 2, Exploring Areas of the Brain Affected by Hydrocephalus

by Karima Roumila As a follow up to the previous article on the anatomy and physiology of the brain and of Brain Awareness Week activities, we would like to continue our learning and explore the terms we so often hear when dealing with hydrocephalus. These definitions are taken from our various educational publications, which are […]

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Hydrocephalus Snowshoe Event Makes Local Paper

The Inaugural Snowshoe Event in Steamboat Springs, CO was featured in the latest edition of Steamboat Today.  It’s an excellent piece that talks about hydrocephalus, the state of research and treatment and features the event organizer Christian Karch, his wife Laura and daughter Sofia who is living with hydrocephalus. Click here to read the article. […]

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Tax Act Brings Changes to SSI / Medicaid Treatment of Refunds, Tax Credits

(the following may be of interest to persons living with hydrocephalus who receive SSI benefits) Several little-noticed provisions of the recently-enacted law that extended the Bush-era tax cuts fundamentally alter how the Supplemental Security Income (SSI) and Medicaid programs treat tax refunds and other tax credits, making it easier for people with special needs to […]

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2012 Conference on Hydrocephalus, ‘Save the Date!’

by Pip Marks and Karima Roumila We are most excited to announce our 12th National Conference on Hydrocephalus which will take place in Bethesda, MD on June 27th – July 1st 2012! The goal of our biennial conferences is to give individuals, families and professionals the tools and connections they need to address the medical, […]

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Hydrocephalus Advocacy – Make Your Voice Heard

by Karima Roumila, MPH The Hydrocephalus Association would like to make hydrocephalus more known in Congress. Let’s educate our policy makers about hydrocephalus and let them know that constituents in their districts are affected by the condition and more research funding is needed. Contact Your Legislator for Hydrocephalus As a constituent, your lawmakers and political […]

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HYDROCEPHALUS WALK TIP OF THE MONTH – January 2011

The ABC’s of Corporate Sponsorship by Randi Corey, HA Director of Special Events The 2011 WALK season is already underway, which means that every Hydrocephalus Association WALK is actively seeking corporate sponsorship.  Where do you work?  Where does your spouse work?  Where do other family members (even extended family) work?  Because, that’s where you start […]

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Hydrocephalus Awareness – Baby Klaus

You may have heard about Baby Klaus in the news recently. Ten months ago, he was born with hydrocephalus in El Paso, TX.  For unknown reasons, he was not treated with the standard surgical placement of a shunt for hydrocephalus – a life-long neurological condition with no cure – but sent home and his parents […]

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Hydrocephalus WALK 2010 – Photos

Below are a small sample of pictures from our 2010 WALK season.  Once again, people from all across the country came together to create awareness of hydrocephalus and raise funds for research while having a great time.  Hence the smiles.

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Hydrocephalus Teens Take Charge – Haylea Speaks Up!

Haylea Lynn Blank : How has having hydrocephalus impacted my life? I was born premature at twenty-six weeks of gestation. I was one of twins. We were both born at twenty-six weeks because my mom went into premature labor, which could not be controlled with medicine in the hospital. Due to being born early, I […]

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Teens Take Charge – Olivia’s Story

My name is Olivia, I’m 14 and have been living with hydrocephalus since birth. I was born at only 29 weeks, which caused a bilateral grade II intra-ventricular hemorrhages (also known as brain bleeds), which developed post hemorrhagic hydrocephalus (excess spinal fluid in the brain). I underwent surgery to receive my first VP shunt at 10 […]

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Announcing Teens Take Charge

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 […]

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