Dear Thomas,
Welcome to the September edition of Pathways. As you may know, September is National Hydrocephalus Awareness Month. HA's Acting CEO, Rick Smith, discusses the Association's plans to participate in the Day of Testimony on September 23rd, a collaborative effort with the Pediatric Hydrocephalus Foundation and other organizations. Our goal is to call attention to the need for more research on hydrocephalus. We would like to introduce, or re-introduce you to one of our favorite and certainly our most adorable educational tools - Boozle - the shunted bear. Also, meet a couple of the members of our 'Teens Take Charge' advisory council; hear Tracy Taback's story of living with hydrocephalus; read about our new outreach initiative for NPH as well as current NPH Research; and get tips on how to build or improve your relationship with your neurosurgeon. The WALK season is in full swing and we are tremendously grateful to the many volunteers who step forward every year and lead our Hydrocephalus WALKS. As the first article of an ongoing series, we introduce several of our WALK Partners. Finally, HA Director of Special Events, Randi Corey, shares her latest WALK Tip on jump-starting your fundraising efforts. With warm regards, The team at the Hydrocephalus Association |
Hydrocephalus in the News |
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The Hydrocephalus Association is a community of people concerned with hydrocephalus who are trying to do something about it. We simply could not do it without the commitment of our amazing volunteers. It is our honor to introduce you to some of them right here.
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Boozle the Hydro Bear Educates Children and Adults about Hydrocephalus
Boozle Bear is one of our favorite teaching tools. A cute and cuddly little bear, Boozle also has a VP shunt and has proven to be a valuable educational tool used by neurosurgeons and nurses to teach patients and their families about the insertion and placement of a shunt. Boozles are made by our many wonderful volunteers around the United States.
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As part of our ongoing series 'A Million Hydrocephalus Stories' HA member, Tracy Taback shares her story of living with hydrocephalus and being treated with an ETV.
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NPH is very often misdiagnosed. HA is seeking volunteers who would be willing to help spread the word by direct grassroots action. Find out how you can help. Read More
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Kite Tales, the Kosair Charities newsletter, featured an article about Maralyn Lewis, a nine year old girl living with hydrocephalus and pseudotumor cerebri, who is nevertheless living her life to the fullest. Read More
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The Chicago Sun-Times featured an article about Eleftherios (El) Giannisis and his successful, if delayed, treatment for Normal Pressure Hydrocephalus (NPH). Come read his story.
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Social Media Update
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From Facebook:
FROM OUR PAGE ON FACEBOOK: We asked our community "Do you prepare a list of questions to ask your or your child's doctor before the appointment?"
Read more to discover how the majority of people answered and for more tips to help you solidify your partnership with the healthcare team caring for you or your loved one.
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Research Update
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New NPH Research Papers
There have been some very interesting research papers about NPH released recently. Come read up on them.
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Advocacy Update
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Hydrocephalus Globally
A recent congressional hearing before the House Subcommittee on Africa, Global Health, and Human Rights discusses research and treatments that may have an effect on hydrocephalus globally.
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Teens Take Charge
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The Hydrocephalus Association would like to introduce you to some of the members of our new Teens Take Charge Advisory Council.
Nicole Padron
Chiara Rocciola
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