Overcoming hydrocephalus

End of Year Donation Fundraising Campaign www.active.com/donate/phfdonate We have raised OVER $10,000 so far!!

1,000,000+ REASONS TO SUPPORT THE PHF!! Incredible news and a great accomplishment to announce. The PHF, as we get ready to celebrate our 8th year of existence in just a few weeks, has raised $1,008,616.50 in 7 years!!! 0$ Toward a salary, all toward grant funding and increasing awareness!!

Sent from my iPhone

** Looking to make a DIFFERENCE? The PHF needs YOU on our TEAM and in OUR Family! When facing adversity, we are given three choices: ~ ~ GIVE IN ~ ~ ~ ~ ~ GIVE UP ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ GIVE IT YOUR ALL!!! The PHF chose # 3 and with the support of the PHF Family, we DONATED $55,000 to Hydrocephalus Research Projects this month for 2015!! No Payroll- No Office Rent- TRUE Grassroots Volunteers and Advocates. Our model is unlike any other and gives you a "seat at the table" in research funding decisions. Volunteer today to be a State Chapter Director or Event Coordinator and start FUNDING A CURE for Hydrocephalus! Email mike@hydrocephaluskids.org for more information and become a part of the PHF Family! Sent from my iPhone

It's near the end of the year... Consider helping us fund a cure and increase awareness. Your donation makes an impact! There are endless organizations you can donate to for a tax deduction💵 . 📣The PHF is an organization made up of volunteers, no salaries are paid😄. The money you donate is used to fund research 🔬 and raise awareness🔆. #WeNeedACure #PHF #501(c)3 http://www.active.com/donate/phfmi

Kellisa has overcome nearly the exact same challenges Hawke has, hits home. TTTS, Surviving Twin, Preemie, Hemorrhage grade 4/5, hydrocephalus, multiple brain surgeries, CP, mobility. 🙏🏼 For Kellisa http://www.foxnews.com/health/2015/12/17/florida-dad-vows-to-take-disabled-daughter-to-all-50-us-states-by-age-18.html#

Could you imagine your neurosurgeon placing a catheter in your brain to treat hydrocephalus, no shunt, no valuable? Tragic. Story states "experimental", nothing experimental in my opinion, neglect. http://elpais.com/elpais/2015/12/11/inenglish/1449837971_662864.html Sent from my iPhone

Hawke on a Harley after a successful fundraiser hosted by the generous Red Wing Motorcycle club this fall. Thank you to Greg Coyle, Ed Smolitsky and all the clubs that came out to support!

"National Ambassadors of Hydrocephalus Awareness" Campaign 2016: "The Boys" Picture Gallery of the 16 submitted entries are now loaded on the website: Meet contestants Logan, Aiden, Armani, Langston, Landon, Benjamin, Grayson, Michael, Gavin, Justin, Dylan, Nicholas, Dante, Bryson, Mason & Joshua..... ~ 2 1/2 WEEKS REMAINING TO ENTER ~ http://www.HydroKids.org The PHF is looking for one male and one female to serve as our National Spokesperson for our 2016 National Hydrocephalus Awareness Campaign. These 2 National Ambassadors will be featured in marketing and promotional materials all through the year ending in September 2016 with National Hydrocephalus Awareness Month. We will randomly select ONE male and ONE female from all entries received. 1) YOU must LIKE our main page https://www.facebook.com/Pediatric-Hydrocephalus-Foundation-Inc-176479809049547/ 2) Just submit one picture of your nominee*, between the ages of newborn to 19 y...

I would like to thank everyone for this successful year in helping us raise money to fund grants! These grants could very well lead to better treatment for Hawke and the entire community!Without your support, none of this would be possible. Thank you!! 🎉🎉 #PHF #AllVolunteers #NeedACure PHF's 2015 Research Grants for Hydrocephalus Research is $55,000 & totaling $115,000 in the last 12 Months!!

There are endless organizations you can donate to for a tax deduction💵 . 📣The PHF is an organization made up of volunteers, no salaries are paid😄. The money you donate is used to fund research 🔬 and raise awareness🔆. #WeNeedACure #PHF #501(c)3 http://www.active.com/donate/phfmi

WHAT IS #GIVINGTUESDAY? We have a day for giving thanks. We have two for getting deals. Now, we have #GivingTuesday, a global day dedicated to giving back. On Tuesday, December 1, 2015, everyone around the world will come together for one common purpose: to celebrate generosity and to give. We hope you will choose the #PHF! It's a simple idea. Just find a way for your family, your community, your company or your organization to come together to give something. Then tell everyone you can about how you are giving to the #PHF. Your generous donation goes directly to funding our mission of educating and supporting the Hydrocephalus community and funding Hydrocephalus Research, which is our top priority. Please make your tax-deductible donation below. Thank you! The Pediatric Hydrocephalus Foundation is a non-profit 501 (c) (3) non-profit charitable organization. All donations are tax-deductible. Donate HERE: http://www.active.com/donate/phfdonate

**CYBER MONDAY SHOPPING** Don't forget when making all your Cyber Monday purchases for the holidays to use Amazon Smile! Choose the Pediatric Hydrocephalus Foundation as your charity of choice and Amazon will donate a portion of each sale to the PHF! Shop and make a difference at the same time! Just click the link to visit Amazon Smile! Happy Shopping! http://smile.amazon.com/ch/26-4582806

"Just got back to Grand Rapids from the Gurdjian-Thomas Lecture at the Grosse Pointe War Memorial. It was an incredible evening spent with Jason and Carmen Adams learning about the Hydrocephalus Clinical Research Network and what is being studied at this time. We also met with a few neurosurgeons and Carolyn Harris a researcher who invited us to join them last night! It was a great talk about pediatric hydrocephalus as well. Thank you so much for such a great event - we look forward to what may come from us attending this event :)" -Donna West PHF Michigan Director https://www.facebook.com/Michiganphf/posts/1084613081557659

Attention Family & Friends! Today the Pediatric Hydrocephalus Foundation, Inc. is having an online fundraiser called the PHF Money Bomb. If you are able, I would ask that you please make a donation of any amount that will go towards finding a CURE for hydrocephalus, the condition Willow, Hawke and one million others are living with. http://www.active.com/donate/ PHFmoneybomb2015 THANK YOU FOR ALL OF YOUR SUPPORT!!! #phfmoneybomb2015 #phfham2015

Day 25 of National Hydrocephalus Awareness Month: Ventriculoatrial shunt placement enables cerebrospinal fluid (CSF) to flow from the cerebral ventricular system to the atrium of the heart. The preferred distal site is the peritoneal space (ventriculoperitoneal shunt), as this space is generally safely accessible and possesses more than adequate absorptive capacity for the CSF volume produced by a given person. In rare cases, the peritoneal space is inadequate, necessitating an alternative distal site. The most common alternative sites are the cardiac atrium (ventriculoatrial shunt) and the pleural space (ventriculopleural shunt). Common reasons for this include previous intra-abdominal infection and scarring due to prior procedures or intra-abdominal pathology. Once the peritoneum is ruled out, the surgeon must verify that the atrium is an acceptable target. Tell Someone and Raise Awareness! #PHFHAM2015

This story really captures the real struggle of hydrocephalus! "I really don't know how to explain this a whole lot, but I'm just a lot different than other kids... I have trouble playing with other kids" http://www.wpsdlocal6.com/story/30095932/a-local-boy-battles-an-incurable-debilitating-brain-disease Sent from my iPhone

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

Very successful PHF Hydrocephalus Charity luncheon today! Over forty people, who had never heard of hydrocephalus, are now well aware of the condition. We also raised some funds, thanks to the generosity and support of so many!

Tomorrow I'm presenting to some influential people at the Detroit Renaissance Center in order to raise awareness for hydrocephalus & highlight The Pediatric Hydrocephalus Foundation. The Hawke story, straight up (over 1 million affected in the U.S.). Forever greatful David Darovitz #Determined #PHF #NeedACure #NeedInnovation

Hawke our hydrocephalus fighter turned seven today!! So grateful, praising God and our amazing support network!!

Jason Adams ( @fighthydro ) 5/14/15, 4:45 PM Hawke & Jaxon were born 5/14/08. Jaxon went to be with the Lord. Hawke with hydro, fighting! #ttts #hydrocephalus pic.twitter.com/XEtdDCw2tC Download the Twitter app Respectfully, Jason Adams

I have not been posting as much as I would like to . . .We still have consistent page views, kind of surprised LOL.  This week is a big week . . .Birthday number SEVEN !! 14 Total surgeries in his lifetime to date.  So many, yet so less compared to so many other children battling lifelong challenges.  Thank you everyone for all of your continue support!

12-Year-Old Madelyn Edgecomb From California Selected as 2015 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition http://www.hydrocephaluskids.org/wordpress/?p=1713

FILM ABOUT HOW THE POWER OF WORDS, AND THE LOVE BETWEEN SIBLINGS, CAN INSPIRE A MOVEMENT http://youtu.be/S1D3RUuHAdI

The Michigan Pediatric Hydrocephalus Foundation is having a walk this year in Grand Rapids. Please consider joining us and making a pledge! August 15th, 2015 at the beautiful Riverside Park in Grand Rapids, Michigan. "live music, we will also have plenty of fun activities for everyone! Enjoy face painting, silent auctions, bake sale, fun games for the entire family and our Awareness WALK around the park" http://www.active.com/donate/phfwalkmi2015

I have two extra tickets for tomorrow's Pistons game fundraiser. Included is a shot and photo on the court after the game $30 a pop if interested please let me know as soon as possible. Thanks!

Hawke getting his shunt reset after his Nuerosurgery check-up MRI. His ventricles look unchanged, next appointment two years. Thankful for the great progress praise God :-)

Thas to all of YOU for making this event a success. We have already sold 40 tickets! Ticket sales end this Friday February 6th. if we sell ten more, six random kids will get to stand next to the Nicks during the National Anthem. Thanks everyone!

"For a special needs parent, it's like being thrown a lifeline. Suddenly, there's a place you can go at 2:00 a.m., and ask for help when you're unsure whether a symptom is normal or not" http://m.huffpost.com/us/entry/6516642

A major accomplishment today! Praise God! On his own, Hawke started to walk tonight. He stood up straight and took five steps on his own! Hawke IS WALKING! http://youtu.be/WrM7hvsxDY8

Fathers, WE should always be striving for continuous improvement as husbands and fathers. Required read - "Evidence is piling up that as men do more of the caregiving, violence against women falls. Delinquency declines. The health, happiness and well-being of men, children and women improve. Couples report better sex lives. Women's income increases. And battles between the sexes diminish" http://www.thedailybeast.com/articles/2015/01/06/fathers-rights-is-the-new-feminism.html

On February 27 I am holding a fundraiser to raise money for the Pediactric Hydrocephalus Foundation. Please consider joining us for a good time for a great cause! https://www.facebook.com/events/544614299001901/

Day two of using walker !