Advocate

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When times are good H parents still brainstorm possible hydrocephalus scenarios and what-ifs. Some go for 8 years with good quality of life, than have a shunt failure and are not the same for years, months. This condition is unpredictable, unexplainable.  Some have brain surgeries yearly, some lose the fight.  Reasons that drive us to advocate and travel to DC.

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Interesting publication: Smartphone-assisted minimally invasive neurosurgery. "neurosurgical procedures with the aid of smartphone-endoscope integration: intraventricular procedures, such as treatment for hydrocephalus" https://medicalxpress.com/news/2018-03-smartphone-assisted-neuroendoscopy.html
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PHF Photo on the Logo Campaign  Hydrocephalus Awareness Month Now - End of September WHO WANTS ONE??? Send an email to mike@hydrocephaluskids.org w/ picture of Hydro Hero  What is it? What does RESEARCH mean to YOU? Welcome to the 1st Annual Hydrocephalus Awareness Month 'Photo on the Logo' Fundraising & Awareness Campaign, starring your Hydro Hero! ***** The Ask: We ask that you load your 'Photo on the Logo' on your Facebook page at least 4 times until the end of September; sharing your story and having your family & friends support our mission of "Funding a Cure for Hydrocephalus" and adding this line to your Facebook post:  September is Hydrocephalus Awareness Month #phfham2016. Please join me in funding research for #Hydrocephalus by donating here: http://www.active.com/donate/phfham2016 All donations are tax-deductible.  How simple is that??? Now, who wants one again?? Sent from my iPhone
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*** Breaking News *** The PHF and its Founder's Michael & Kimberly Illions, have been nominated and selected as one of the Finalists to receive a RareVoice Award in the Patient  Advocate category at this year's RareVoice Awards Gala, being held on Thursday, October 10th at the Arena Stage in Washington DC.  "This is a great honor and the timing couldn't be better as National Hydrocephalus Awareness Month begins on September 1st, and we just came back from our Hydrocephalus Awareness Day on Capitol Hill with over 125 people from 20 States", stated Michael Illions, the Vice President & Director of Advocacy for the PHF. Everyone at the PHF congratulates the other nominees from the National MPS Society, Parent Project Muscular Dystrophy, Acid Maltase Deficiency Association, Jett Foundation, University of North Carolina Chapel Hill & Jonah's Just Begun. The Second Annual Rare Voice Awards Gala is a celebration to honor advocates who gave rare disease pa
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