Overcoming hydrocephalus

This is not science fiction, this is the consequence of untreated hydrocephalus.  This is a child and family fighting to overcome, making progress miraculously. We are fighting for a cure! #PHF  "Roona Begum's Giant Head Reduced to 23 Inches; Starts Smiling, Crawling, Talking" http://www.ibtimes.co.in/roona-begums-giant-head-reduced-23-inches-starts-smiling-crawling-talking-605493

http://thejns.org/doi/abs/10.3171/2014.6.JNS14111?journalCode=jns

Throwback Thursday: April 28th, 2009 Congresswoman Michele Bachmann in looking for Co-Sponsors of H. Res. 373, the PHF led effort to designate September National Hydrocephalus Month, literally walked around the Floor of the House and collected signatures from her Congressional colleagues.  Over 50 signatures were needed to move the process at a quicker pace. She collected 89!!  The image below is Congresswoman Bachmann's cover letter, which had an attached lined signup sheet. She received so many signatures and ran out of room, that Members of Congress signed her cover letter! It was a great bi-partisan effort for sure!  ‪#‎ TBT‬   ‪#‎ PHF‬   ‪#‎ Hydrocephalus‬   ‪#‎ Awareness‬

September is National Hydrocephalus Awareness Month! You know how we know? Because the PHF is the organization that went to Congress in 2009 to have a Resolution declared and passed! Prior to July 2009, there was NO Awareness Month! Stay tuned for an EXCITING AND GROUNDBREAKING MONTH :-)

This article published in the US News lists the 50 Top-Ranked Pediatric Hospitals for Neurology & Neurosurgery. The PHF has given donations to be used for the benefit of Pediatric Hydrocephalus patients, or Grants specifically for Hydrocephalus Research Projects including U of M Children's Mott hospital ranked #24. Also provided grants to 2 Ranked Hospitals, 4 of the top 10 & 7 of the top 20!! Boston Children's Hospital (#1), Children's Hospital of Philadelphia (#2), Children's Hospital of Pittsburgh (#9), Nationwide Children's Hospital (#10), Primary Children's Hospital (#12), Children's Hospital Colorado (#14), & Seattle Children's Hospital (#17). http://health.usnews.com/best-hospitals/pediatric-rankings/neurology-and-neurosurgery?page=5

Pediatric Hydrocephalus Foundation, Inc. ~ ONE MONTH FROM TODAY ~ ** The PHF Goes to Washington!!** ~ PHF 4th Annual Hydrocephalus Awareness Day on Capitol Hill on Friday August 22nd in Washington DC ~ This Amazing Event would not be possible without the financial support of our Corporate Sponsors: Medtronics, Cameron Can Foundation, New Jersey Pediatric Neuroscience Institute, Aesculap, Nemours ~ Alfred I. duPont Children's Hospital, New Jersey Right to Life, Amicus Therapeutics, T.L.C. "Mobile" Groomers If you missed out this year, don't worry, we will be back in DC next year for the 5th ANNUAL Hydrocephalus Awareness Day on Capitol Hill in 2015!!

The PHF was started by two parents with a child whom has hydrocephalus and is made up of parents across the nation! With your support we are making a difference in this fight for adults and children www.hydrokids.org  

@fighthydro: Need more research to learn more! "Team discovers genetic dysfunction connected to hydrocephalus". @NIH http://m.medicalxpress.com/news/2014-07-team-genetic-dysfunction-hydrocephalus.html

@fighthydro In a little over 30 days we are meeting on Capitol Hill to advocate for hydrocephalus! @congressblog #hydrocephalus #needacure Carmen Adams Diana Crane

Imagine fighting a government to receive enough treatment for your child?  Thankful they won. #hydrocephalus http://m.ngnews.ca/Opinion/Editorials/2014-07-13/article-3798992/Right-decision-after-struggle/1

Please pray for this family whom lost their Son to hydrocephalus complications this past Friday. http://www.silive.com/obituaries/index.ssf/2014/07/mason_ocasio-guarnieri_2.html

Convinced of the reach of twitter today on a conference call I created an account.  Purely as an advocate to fight hydrocephalus.  If you have an account hit me up!  @hydrofighter