Overcoming hydrocephalus

A few years ago I made a short clip on hydrocephalus and political advocacy.  Not the best, but it was the first video I ever created :-)  #Hydrocephalus #RaiseAwareness #PHFHAM2016 https://youtu.be/SAt5deRyhtg

Day 18 of National Hydrocephalus Awareness Month: The ONLY thing that matters is RESEARCH! We cannot continue to allow our children & adults to live a life of pain, surgeries and fear of the unknown. SUPPORT HYDROCEPHALUS RESEARCH! Research is the only way to discover a cure, to discover improved treatment options. #PHFHAM2016

Did you know there is a Hydrocephalus bill in congress with 10 co-sponsors? We need additional sponsors, consider calling your congresswoman / congressman.  Congress woman Miller has sponsored the bill from Michigan.   Advancing Research for Hydrocephalus Act of 2015 / 2016 Amends the Public Health Service Act to require the Centers for Disease Control and Prevention to: (1) enhance and expand infrastructure and activities to track the epidemiology of hydrocephalus (a condition in which fluid accumulates in the brain); and (2) incorporate information obtained through those activities into a National Hydrocephalus Surveillance System. Requires the Department of Health and Human Services (HHS) to ensure that the System facilitates further research on hydrocephalus. https://www.congress.gov/bill/114th-congress/house-bill/2313/cosponsors?overview=closed

Photo of Hawkes brain being crushed by spinal fluid before his first shunt was placed.  It's a miracle he is who he is today, praise God! The small gray inside diameter of his skull is his brain in a crushed state. #hydrocephalus #phfham2016

Day 11 National Hydrocephalus Awareness Month: In 2011 The first ever Pediatric & Adult Hydrocephalus Congressional Caucus was founded by Congressman Leonard Lance, (NJ) and Congressman Tim Walz, (MN) by request of the Pediatric Hydrocephalus Foundation. Prior to 2011, there was NO such group in Congress! #PHFHAM2016 #realactionrealchange

I dislike fundraising more than you know.  But the threat of hydrocephalus, desperate need for improved treatment and ultimately a cure keeps us seeking change (over 50 years since an innovative treatment improvement).  Knowing the time-bomb shunt treatment can fail any day and potentially change Hawkes personality and quality of life forever or even lead to death drives us.  Observing the countless children and adults fighting and suffering through hydrocephalus.  The third world countries where some children are abandoned or can't receive treatment (eventual death).  Although the PHF has a pediatric focus, grants we fund will impact all ages potentially on a global scale. That is my day 8 of hydrocephalus awareness month personalized message.  Thanks friends and family for all your amazing generosity and support, were very blessed.

Would like to thank family, friends and strangers for supporting our efforts seeking a cure for hydrocephalus and improving treatment.  Love to receive a report we funded because of your generosity, thank you!!  PS This grant was in partnership with a research project out of U of M. Where are your donation dollars going? #PHF #Hydrocephalus #WeNeedACure #ThankYou Respectfully, Jason Adams 8104419170 Sent from my iPhone

🚨📢Published 8/25, this was breaking news to us: "The records show improperly sterilized tools complicated operations from appendectomies and brain surgeries to cleft palate repair and spinal fusions. Patients were kept under anesthesia for up to an hour as staffers replaced instruments. Dozens of operations were canceled at the last minute, some after anesthesia was administered" http://www.detroitnews.com/story/news/special-reports/2016/08/25/dirty-instruments-plague-dmc-surgeries/89303582/ Sent from my iPhone