Looking for additional 2014 tax deductions? Donate to the PHF, we are a 501(C)3. None of us collect a salary, every penny goes toward grant funding and awareness projects. Our President works out of her home so we don't use your donations for building fees, it all goes toward the cause!!
http://www.active.com/donate/phfmi
Posts
Last Saturday, the PHF Board of Directors approved $60,000.00 in grant funding for 6 Hydrocephalus related Research Projects in 2014. These various research projects, from $1,500.00 requested to $17,500.00 will hopefully be a game-changer for our loved ones with Hydrocephalus!
Research Project Grant Recipient:
Jennifer Strahle; Chief Resident @ Regents of the University of Michigan
Grant Amount: $5,000.00
Research Project: * Mechanisms and treatment of hydrocephalus after neonatal intraventricular hemorrhage in a novel rodent model
*This is a PHF renewal research project, having provided partial funding last year.
Funding provided by: PHF MI State Chapter Directors Donna West & Jason Adams, PHF CO State Chapter Director Christina Brown & PHF PA State Chapter Director Jenna Sciulli
Shunt refresher -
The most common treatment of hydrocephalus is the placement of a shunt (a narrow piece of tubing) into one of the fluid-filled ventricles inside the brain to drain excess fluid. 40,000 shunt surgeries are performed annually.
A shunt has four main parts:
The upper catheter is a small, narrow tube that is inserted into the ventricle (a small opening or pouch) inside the brain that contains the cerebrospinal fluid (CSF).
The reservoir is where the excess CSF is collected, then drains into the bottom portion of the shunt. Doctors can remove samples of CSF by sticking a needle into the reservoir and can inject medication or fluid into the shunt to test for proper flow.
The valve controls how much CSF is allowed to drain from the brain. Most valves work automatically when fluid pressure in the head gets too high. Some valves have special devices to keep too much fluid from draining.
The lower catheter is the bottom-most part of the shunt. It is a small, narrow tube
"There's not a lot out there to treat or learn about hydrocephalus," Roberts said. "It only gets a small portion of government funding for research, which is a tiny amount compared to other, less prevalent conditions. - See more at: http://www.hartselleenquirer.com/2014/11/18/hpd-officers-grows-beards-for-hydrocephalus/#sthash.hNcoItgH.dpuf
http://www.active.com/donate/phfmi
As the result of my meeting and the cause, Congresswomen Miller has joined the Congressional Hydrocephalus Caucus!
A congressional caucus is a group of members of the United States Congress that meets to pursue common legislative objectives. Formally, caucuses are formed as congressional member organizations (CMOs) through the United States House of Representatives and governed under the rules of that chamber.
http://www.hydrocephaluskids.org/wordpress/?page_id=548
Hawke
This is our son Hawke Adams! He is 6 years old. He has three awesome siblings, a great smile, and a fighting spirit. He has had 10 shunt surgeries, 8 within a four month period. Hawke was born dead along with his identical twin, Jaxon, who passed. After 13 minutes, God blessed Hawke with breath! Hawke suffered an intraventricular hemorrhage from his birth and was diagnosed with hydrocephalus at two days old. Eight months later, Hawke receive his first shunt. His family loves this cute fighter!
Day 26 of National Hydrocephalus Awareness Month. Did you know the Dandy-Walker malformation accounts for two to 10 percent of children with hydrocephalus? It is defined by hypoplasia of the cerebellar vermis, cystic dilatation of fourth ventricle and hydrocephalus. Now you know! Tell someone and spread the awareness. # phf # hydroawareness # realactionrealchange
Day 19 of National Hydrocephalus Awareness Month. Did you know 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. Now you know! Tell someone and spread the awareness. # phf # hydroawareness # phfhydroblue
Day 8 of National Hydrocephalus Awareness Month. Did you know Hydrocephalus may be acquired? Acquired hydrocephalus develops at the time of birth or at some point afterward. This type of hydrocephalus can affect individuals of all ages and may be caused by injury or disease. Now you know! Tell someone and raise awareness! # phf # hydrowareness # phfhydroblue
I have taken the PHF's Pie Hits Face Duel Challenge and made a donation to www.active.com/donate/phfdonate for Hydrocephalus Research!!
The gauntlet has been thrown down and challenges have been made to.... Mikayla Pekala, Tracy Adams Varner Josh Amber Atwood
You have 24 HOURS to accept/take the challenge or donate $25 to the PHF for Hydrocephalus Research @ www.active.com/donate/phfdonate
And don't forget to post your video and make your 3 challenges to friends and family!!!
PHF's Jason Adams and family takes the Pie Hits Face Dual Challenge!
http://youtu.be/VAEqjO284Ps
** Great article in the Wall Street Journal featuring PHF Board of Director Mary Ann D'Oria and her Hydro Hero All-Star daughter Adrienne, (who is an admin of the PHF's Teen Page on Facebook), about transitioning from child to adult for medical care and all the problems that go with it. This is something that will be discussed next Friday with our elected officials during our National Hydrocephalus Awareness Day on Capitol Hill.... http://online.wsj.com/articles/the-challenges-after-surviving-a-childhood-disease-1407797952
Physiatrist appointment today for Hawke. Prayers for accuracy and discernment. Expecting a push for Botox from doctor, no plans on taking the Botox route. You should see this boys reaction when he overhears words about doctors, the stress jumps on him. Praying this stress would not get the best of him in Jesus name.
A write up that covers the fears and concerns that we have
This write up captures it all about hydrocephalus. . .one of our biggest concerns is the potential for loss of mental capacity. #PHF #WeNeedACure #Encouraging
http://cumberlink.com/news/local/communities/harrisburg/brain-surgeries-can-t-stop-matt-kocsis/article_81478d48-1aa2-11e4-8e68-001a4bcf887a.html
Hydrocephalus. The days that pass which your child (or self) show little to no symptoms are great; but hydrocephalus is always lurking in the background. At any given moment without warning an E.R. Trip resulting in brain surgery may be necessary. Grateful for each day, choosing to fight for the cause!! Advocating in D.C. This month!
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
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
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!!
These are the 50 top-ranked centers for children with serious neurological problems. Survival following complex surgery, surgical complications and infection prevention were among the kinds of data, collected from a detailed U.S. News survey of children's hospitals, that produced 83.3 percent of each hospital's score. The other 16.7 percent reflects how many of 450 pediatric neurologists and neurosurgeons responding to surveys in 2012, 2013 and 2014 recommended the hospital for serious cases. http://health.usnews.com/best-hospitals/pediatric-rankings/neurology-and-neurosurgery
I consider this a parent must-read 1: Warn your Girl Child Never to sit on anyone's laps no matter the situation including uncles. 2: Avoid Getting Dressed in front of your child once he/she is 2 years old. Learn to excuse them or yourself. 3. Never allow any adult refer to your child as 'my wife' or 'my husband' 4. Whenever your child goes out to play with friends make sure you look for a way to find out what kind of play they do, because young people now sexually abuse themselves. 5. Never force your child to visit any adult he or she is not comfortable with and also be observant if your child becomes too fond of a particular adult. 6. Once a very lively child suddenly becomes withdrawn you may need to patiently ask lots of questions from your child. 7. Carefully educate your grown ups about the right values of sex . If you don't, the society will teach them the wrong values. 8: It is always advisable you go through any new Material like cartoons you just bou
Awareness
This link will take you to a video created for the benefit concert about Hawke and hydrocephalus. http://m.youtube.com/watch?v=LFPyZiVrdVs
Frustrating!
Tragic: 13 year old misdiagnoses causes death. She had Hydrocephalus. Lauren 13, of Richmond, Sheffield, died in her sleep last October – three weeks after starting to suffer with severe headaches initially diagnosed as migraines. http:// m.thestar.co.uk/ news/health/ local-health/ parents-demand-a pology-over-she ffield-teenager -s-death-1-6630 277
Benefit concert pictures
This weekends benefit concert was a great success!! Nine of this would of happened without Gods hand behind it. Thank you to all involved!
Benefit concert
This Saturday is the benefit concert for the Pediatric Hydrocephalus Foundation. This foundation is helping to fund real research and awareness to help children like Hawke and the millions of children and adults with this condition.
Benefit Concert
Benefit concert for hydrocephalus! Consider joining us at the UAW Center for Human Resources Auditorium as Teen Nation Tour provides the entertainment! https://m.facebook.com/events/726657874051904
Benefit concert
🎉🎉🎉🎉 PHF and I have have partnered with Teen Nation Tour ( http://www.teennationtour.com ), General Motors and the UAW to create a night of entertainment and excitement! 10.00 A ticket $5 for kids 6-12 with children 5 and under free. Contact me for tickets 810-441-9170 jason@hydrocephaluskids.org Still finalizing headliners
A big fundraiser, awareness event coming up
Mark you calendars for May 3rd! We have a few potential venues :-)
Hearing the laughter of children in the morning particularly Hawke and Canyon for the past 30 minutes... So grateful!! Not taking good health for granted, praising God while I pray for those fighting children in hospitals (my news feed is full this past week of children fighting hydrocephalus among other issues).
24/7
Hydrocephalus doesn't take weekends off and neither do we at the PHF! We are here for you 24/7/365! When you need us, just reach out to us via email at jason@hydrocephaluskids.org , or by phone at 810-441-9170 or shoot us a note on Facebook. That's how we do it at the PHF. REAL ACTION~REAL CHANGE. https://m.facebook.com/Michiganphf
Our children play such a major role in Hawke's life and development (thank You Lord). This video stirs some emotions and is a great reminder of what love looks like. Prayers up for Teddy's progress and family.
This short film captures a young girl's love for her brother, who has cerebral palsy.
http://www.nytimes.com/2014/03/11/opinion/my-brother-teddy.html
It's not about my son, it's about the children and all people fighting hydrocephalus! Raising awareness, raising money for better treatment and a cure!
Article published in Lapeer County Press. It won't let you access online for 30-days :-/
http://mcp.mihomepaper.com/news/2014-03-16/Front_Page/Beauty_Queen_poised_for_crown.html
