Overcoming hydrocephalus

I was blessed to meet with the Regional Manager and Legislative counsel of Senator Stabenow's office. I also met with Senator Peters Constituent Director. Our meetings went very well while an honest interest in our concerns was present. I spoke about Hawke, the hydrocephalus community and Rare Disease legislation H.R. 1421 (that will be beneficial to both communities if approved). I also challenged both Senators to support and champion an H.R. 2313 companion bill in the Senate. We need the "Advancing research for hydrocephalus Act of 2015" to pass the house first. Please contact your congress and request them to support approving H.R.2313. THANK YOU FOR ALL OF YOUR CONTINUED SUPPORT! #PHF

Tomorrow, I am meeting with Senator Stabenow and Senator Peters to advocate for hydrocephalus. Specifically requesting that the two join the hydrocephalus congressional caucus and to champion a companion bill H.R. 2313 Advancing Research for Hydrocephalus Act of 2015. https://www.govtrack.us/congress/bills/114/hr2313

Next Saturday! Getting excited ! It's not too late to join us. Did you know 20-30,000 Veterans have or will develop hydrocephalus (DOD Report 2012)? Grants we fund go toward research that can help the entire hydrocephalus community.

Still accepting walkers! Come join us to help fund research and development, or better yet a cure!

** BREAKING NEWS ** US HOUSE OF REPRESENTATIVES PASSES 21st CENTURY CURES ACT 344 - 77!! We thank Chairman Upton & Representative DeGette for their BIPARTISAN leadership in this effort.  And a PHF thank you to our own Board of Director Jennifer Westdyke & PHF PA State Chapter Director Jenna Sciulli who participated in Round-table Discussions on 2 occasions in Pennsylvania as this legislation was crafted & created.  What this means to the Hydrocephalus Community? * Increased funding to the NIH over the next 5 years to total just under $9 BILLION DOLLARS * Faster & more efficient FDA approval process (think SHUNT improvements / new technologies reaching the market quicker) What's next? The Bill heads to the Senate to start the same process ending with a vote, and then if passed, to the President's desk for a signature.

"Bullied most of her life. She shared through her personal experience that the most important thing in ending the bullying of a child with  special needs  is" http://www.abilitypath.org/areas-of-development/learning--schools/bullying/articles/bullying-special-needs-overview.html Respectfully, Jason Adams