Overcoming hydrocephalus

PHF * RESEARCH MATTERS * The PHF's Michigan State Chapter Director's Jason Adams & Donna West with your donations were able to to fund this research project by University of Michigan's Dr. Strahle in 2015. The laboratory results appear online at www.ScienceDirect.com Research Report: Henoglobin-induced neuronal degeneration in the hippocampus after neonatal intraventricular hemorrhage #PHFFundingaCure #RealActionRealChange #phfhydro

NIH Hydrocephalus Fact Sheet "The prognosis for individuals diagnosed with hydrocephalus is difficult to predict, although there is some correlation between the specific cause of the hydrocephalus and the outcome" http://www.ninds.nih.gov/disorders/hydrocephalus/detail_hydrocephalus.htm

Sometimes progress is when your child with hydrocephalus finally admits when his head hurts. #WeNeedACure #Hydrocephalus #PHF #WeatherSwings

I met with congresswoman Candace Miller over a year ago, today she agreed to sponsor a major bill for hydrocephalus! 🎉🙏🏼 "ANOTHER MEMBER OF CONGRESS JOINS OUR FIGHT Just received word today that Congresswoman Candice Miller has signed on as a Co-Sponsor of HR 2313; Advancing Research for Hydrocephalus Act of 2015 Congresswoman Miller is our Michigan State Chapter Director Jason Adams' Congresswoman. Jason reached out to their office month's ago and set the ground work; we also visited her DC office 2 weeks ago during Rare Disease Week Lobby Day to follow up. If you want to reach out to your member of Congress and ask them to support HR 2313, please email mike@hydrocephaluskids.org for information and include your zip code.

** PHF IN THE NEWS ** 'National Ambassador' Tyler Side featured in the Spokesman-Review: Tyler Side is a cheerful, social boy, who smiles often, but the 11-year-old's scars reveal a childhood studded with struggle. Tyler has hydrocephalus, an incurable brain condition characterized by excessive cerebrospinal fluid in the brain's ventricles, which puts harmful pressure on the tissues of his brain. The scars are from the 16 life-saving surgeries the boy has endured due to the condition. Now, the Colbert boy will use his story to help others with hydrocephalus. The Pediatric Hydrocephalus Foundation recently selected him as one of two 2016 national ambassadors for pediatric hydrocephalus awareness. "I feel excited," he said. "I hope that the hydrocephalus foundation can find a cure for it." Tyler will be featured in advertising campaigns and promotional materials heading into the eighth annual National Hydrocephalus Awareness Month in Se...

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