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
Posts
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
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
PHF Photo on the Logo Campaign Hydrocephalus Awareness Month Now - End of September WHO WANTS ONE??? Send an email to mike@hydrocephaluskids.org w/ picture of Hydro Hero What is it? What does RESEARCH mean to YOU? Welcome to the 1st Annual Hydrocephalus Awareness Month 'Photo on the Logo' Fundraising & Awareness Campaign, starring your Hydro Hero! ***** The Ask: We ask that you load your 'Photo on the Logo' on your Facebook page at least 4 times until the end of September; sharing your story and having your family & friends support our mission of "Funding a Cure for Hydrocephalus" and adding this line to your Facebook post: September is Hydrocephalus Awareness Month #phfham2016. Please join me in funding research for #Hydrocephalus by donating here: http://www.active.com/donate/phfham2016 All donations are tax-deductible. How simple is that??? Now, who wants one again?? Sent from my iPhone
We would like to thank Alicia Cloutier of RE/MAX Encore for sponsoring a hole in our upcoming golf tournament to raise money for a cure! Alicia has been an advocate for hydrocephalus research and a personal friend for many years. Please consider her as an agent if you are entering the real estate market. Alicia Cloutier / Realtor RE/MAX 436 S. Broadway St., Suite E Lake Orion, MI 48362. Direct (248) 891-2087 http://www.aliciacloutier.com/home.asp
We still have available holes to sponsor at our upcoming Golf outing on 9/25. We also have team and individual registration openings available. Please contact me if interested! 810-441-9170, jason@hydrocephaluskids.org . Registration is $90. Included is the following: 18 Holes of golf, Door prizes, Snack at the turn, Range balls, One drink ticket and dinner at the end! https://www.facebook.com/events/1666842176971940/?ti=icl
Sharing our friends post and beautiful hydrocephalus fighters photo: "Friends, can I ask that you help us reach $3000 before Saturday? If 26 of my friends donated $1.00 we would make it! Our goal this year is to completely surpass last years raised amount of $5000 and it takes a large community to help with that. Even if you are not joining us for the walk, you can make a donation at the link below :) At 5 years of age, Willow has endured 14 brain surgeries. Her shunt can fail at any time and that requires new surgeries. There are research projects out there that need to be funded to support a treatment and future CURE so she does not need surgeries any longer. http://active.com/donate/phfwalkmi2016 Sent from my iPhone
** YOUR DONATION DOLLARS AT WORK **
RESEARCH MATTERS!!
It's a great accomplishment to be sure as the PHF has funded HUNDREDS of THOUSANDS of dollars in research projects since our inception in 2009.
One of our top recipients is Boston Children's Hospital with the team of Dr. Warf, Dr. Madsen & Dr. Lehtinen.
One specific Research Project has seen tremendous success and now hits the street for clinical trials!!!
Seeing this project go from a sketch drawing three years ago, to a presentation slide two years ago, and just this past April, holding the prototype in my hand, to it now being in the clinical phase brings joy to my heart and tears in my eye!!
It's what we said we would do from DAY ONE and we're doing it!
Here is a picture with Dr. Madsen from our visit with him this past April with PHF Board of Directors and our Massachusetts State Chapter Director with her Hydro Hero daughter.
http://www.prnewswire.com/news-releases/alcyone-lifescienc
Interesting development / concept: "This is a simple and intuitive idea, and I am very hopeful that it will benefit many children by reducing shunt problems." -Benjamin Warf, Principal Investigator of the clinical study at BCH http://www.prnewswire.com/news-releases/alcyone-lifesciences-announces-clinical-use-of-the-reflow-system-for-the-treatment-of-hydrocephalus-300307433.html
Top Five Facts:
• Hydrocephalus is a lifelong condition, affecting over one million Americans from newborn to seniors
• An average of 40,000 shunt operations are performed each year in this country
• Americans spend in excess of $1 BILLION to treat this condition
• Hydrocephalus is believed to occur in about 1 per 500 births
• Lack of advancements in treatment have left many people with hydrocephalus unable to lead full and productive lives
http://www.hydrocephaluskids.org/wordpress/?page_id=8
"It was revealed the cause of death was hydrocephalus – water on the brain – which led to his collapse and eventual death"
This parent lost a child unnecessarily, heartbreaking. Increasing awareness and advocacy is critical for our children. Neglect weather intentional or incidental is possible and therefore requires tenacity by the parent or patient. We need a cure desperately. Our children, our community. #PHF #Hydrocephalus.
https://www.aop.org.uk/ot/professional-support/clinical-and-regulatory/criminal-trial-of-optometrist-begins
A text from wifey...We need a cure! Posting just to illustrate what Hawke and many overcome....this is typical with weather swings, weather fronts and sometimes just because. It's good because for most of his life he would refuse to tell us due to his concern of going to the doctor. #Hydrocephalus #PHF
How do we spend the money you donate? We do not pay a salary with it, no buildings leased. We're an all volunteer organization ran by volunteering parents of children with hydrocephalus. Our research benefits children and adults. Thank you for your investment! Learn more by following the link below :-)
http://www.hydrocephaluskids.org/wordpress/?page_id=652
Birthday
Hawke turns eight years old today, so grateful! 2lbs 6.9 ounces at birth. Thankful to the Lord for helping us through the challenging times and so grateful for Hawkes progress !
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
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
When your son throws up and you hope he has a fever but he doesn't. Too many symptoms point to a likely shunt failure. 12:30 on a Saturday night, that sinking feeling as my wife drives Hawke to ER In order to have multiple pictures of his head taken. The moment you think "this time" could be his next brain surgery. Praising God, no shunt malfunction but a "change" noted (follow up). Thank you Lord for so much!! #WeNeedACure #PHF #HydrocephalusSucks
PHF UPCOMING EVENT!
Friday March 25th
Gametime: 7:00pm
PHF Michigan
Pediatric Hydrocephalus Awareness Night
NBA's Detroit Pistons host the Charlotte Hornets!
The Palace of Auburn Hills
6 Championship Drive
Auburn Hills, MI 48326
Please join us on Friday, March 25th as the Detroit Pistons take on the Charlotte Hornets.
Contact Jason Adams @ (810) 441-9170 or email jason@hydrocephaluskids.org to order tickets.
$8.00 from every ticket purchased goes to support the PHF's Mission!
** HR 2313 Update **
NEW Co-Sponsor of HR 2313
It was officially announced today that Congressman Bill Pascrell (NJ), joined Congressman Leonard Lance, Congressman Andre Carson & Congressman Rodney Davis as Co-Sponsors of Congressman Chris Smith's Bill HR 2313; The Advancement of Hydrocephalus Research Act of 2015!
#HR2313 #momentum
TOP 5 "Bridging the Gap" Apps of 2015 according to "Parenting special needs"
BridgingApps took a look back at some of its most popular app reviews from 2015. They select Apps to target and improve individual skill development to help children and adults with disabilities reach their highest levels of physical and cognitive development. Read their most accessed app reviews from 2015.
SEE IT NOW: https://parentingspecialneeds.org/article/top-5-apps-of-2015/
2016 Campaigns
The year 2016 is a pretty important election year, and with that being said, the PHF is introducing 2 "election themed" campaigns to raise awareness, advocate & support the passing of HR 2313; Advancing Research for Hydrocephalus Act.
Plenty more details to follow on these 2 campaigns, including the introduction of the following election style campaign buttons.
These campaign buttons will be worn by PHF'ers and given out to elected officials & staffers to help promote & advocate for HR 2313 at all our visits to Capitol Hill to build up support for passage of this critical legislation for the Hydrocephalus Community; the creation of a National Registry for Hydrocephalus for use by the CDC, FDA, NIH & HHS
Welcome to 2016!!
The PHF started 7 years ago this month with 4 families from New Jersey. All having a child with Hydrocephalus, we recognized the need for a Pediatric focused advocacy & support organization, which did not exist, and Hydrocephalus Research Funding, which was not being done at that time.
Our slogan, tagline & mission statement were all the same:
"Funding a Cure for Hydrocephalus"
Seven years later, we now have over 50 Volunteers from over 30 States in the US joining with us, sharing & believing in our Mission Statement!
Over the years, we have donated OVER $150,000 to medical institutions, children's hospitals, other Hydrocephalus advocacy organizations & various neurosurgery departments to be used for the care and betterment of those with Hydrocephalus.
In addition, we are honored to have been able to provide OVER $200,000 in Hydrocephalus Research Funding:
$115,000 Boston Children's Hospital
$ 25,000 Bitol Desig