Overcoming hydrocephalus

#AIFM1 #Genetics Variant c.1424C>T #Morocco Looking for a family in Morocco with a member who has the same condition. Sent from my iPhone

My inspiration for this run is Hawke. Hawke is our son and is thirteen. Hydrocephalus is one of many challenges he faces which are incurable. We consider hydrocephalus the most dangerous condition he has. Hawke is one of a million living in the U.S. with hydrocephalus and he has endured ten brain surgeries as a result. No cure exists for hydrocephalus. Thank you for your support through this event 😁. REGISTRATION CLOSES SUNDAY NIGHT 9/12. All money raised benefits the non profit MI PHF.#hawkesummerrun #hydrocephalus https://runsignup.com/Race/MI/Metamora/HawkeSummerRun

Consider registering for our 5K 10K Run, walk roll to help us raise funds for a cure! All proceeds benefit the MI PHF which is a registered 501(c)3 :-) Link and details below: #hawkerun https://runsignup.com/Race/MI/Metamora/HawkeSummerRun 5K or 10K Run, walk or roll, anywhere you choose with our virtual event. Registration is open, you can choose when to run between August 1st and September 18th. Register here and post your completed photo to our Facebook page, or anywhere on social media with the hashtag #Hawkerun. We are trying to discover a cure or breakthrough in how hydrocephalus is treated, half of all shunts fail within two years. All the money raised through registration is directly deposited to the Pediatric Hydrocephalus Foundation a registered 501(c)3 TIN  26-4582806 .  Learn more about hydrocephalus @ www.hydrokids.org.  To learn more about the event, hydrocephalus or the Pediatric Hydrocephalus Foundation please contact me, Jason Adams the Co-Director for th...

Hawke has been doing well, hope you and yours are doing well all things considered. You can follow up with our Foundation Michigan Pediatric Hydrocephalus Foundation  @ www.facebook.com/MIPHF or via Facebook on my personal page  https://www.facebook.com/jason.seven.33 Sent from my iPhone

Checking to see if posting from my email still functions :-)

Interesting publication: Smartphone-assisted minimally invasive neurosurgery. "neurosurgical procedures with the aid of smartphone-endoscope integration: intraventricular procedures, such as treatment for hydrocephalus" https://medicalxpress.com/news/2018-03-smartphone-assisted-neuroendoscopy.html

Manufacturer and user facility device experience  "The MAUDE database houses medical device reports submitted to the FDA by mandatory reporters" https://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfmaude/search.cfm Sent from my iPhone

2017 PHF Year End Fundraising Campaign http://www.active.com/donate/phfdonate As 2017 comes to an end, we hope you will choose the PHF with your end of year tax-deductible donation. In the last 12 months; December 2016 to December 2017, the PHF has approved & funded $141,500 to Hydrocephalus Research Projects. Without your support, this would not have been possible! Your contributions have helped make the PHF the leading independent national funding organization for Hydrocephalus Research. We are so grateful to you for helping us support these research opportunities to find better treatment options and one day, a CURE! http://www.active.com/donate/phfdonate

It took me about six months, but the video I envisioned to help with increasing hydrocephalus awareness is  finally complete, thanks everyone for the photos! 👍🏼 #hydrocephalus https://youtu.be/MmV1kmce6Cg Sent from my iPhone

Trust me I get tired of asking for donations but I grow more tired of knowing there's no cure for my son's condition.  Consider making a donation of any amount today, to a great organization. Donations are tax-deductible, thank you.  #GivingTuesday #Hydrocephalus https://www.facebook.com/donate/2102251789994509/

PHF #GivingTuesday 2017 www.active.com/donate/phfgivingtuesday Please watch this video message made by Hydro Hero Cole Illions for this year's #GivingTuesday campaign. Please help us "Fund a Cure for Hydrocephalus" You can make your tax-deductible donation by clicking the link below for our donation page for #GivingTuesday www.active.com/donate/phfgivingtuesday https://youtu.be/faVvbDugh_A Sent from my iPhone

These stories are heartbreaking 💔 We desperately need a cure! Please consider the PHF this upcoming #GivingTuesday 11/28 (any amount). http://www.active.com/donate/phfmi http://www.dailymail.co.uk/health/article-5084753/Girl-s-head-DOUBLES-size-rare-disease.html

"Development of its Self-Cleaning Shunt. Micro-robot which can be controlled remotely or within the body.  Its miniature dimensions allow it to navigate and crawl in different spaces within the human body, including blood vessels, the digestive tract and the respiratory system.  Its unique structure gives it the ability to move in tight spaces and curved passages as well as the ability to remain within the human body for prolonged time" http://markets.businessinsider.com/news/stocks/Microbot-Medical-Inc-Receives-Additional-Government-Grant-for-Development-of-its-Self-Cleaning-Shunt-1007289331 Sent from my iPhone

"Alcyone's Alivio Ventricular System, is comprised of a Flusher and Ventricular Catheter with unique relief membrane. The system, in conjunction with any CSF shunt, is designed to address one of the two most common problems with CSF shunts" https://www.prnewswire.com/news-releases/alcyone-lifesciences-receives-eu-ce-mark-approval-for-alivio-ventricular-catheter-and-flusher-system-for-treatment-of-hydrocephalus-300541763.html

Looks like an insightful read:  "Have we ever thought how neurosurgeons feel during or after surgeries"? http://ow.ly/NgKK30fKEWt

"A doctor called to tell her that her newborn daughter, Isabella, had hydrocephalus, the buildup of fluid in the brain. The 2-month-old had fought for her life from bacterial meningitis and wasn't expected to live" http://www.gazettenet.com/Teen-girl-battles-incurable-brain-condition-12866643

The video of Representative Howell (Michigan House of Representatives) recognizing September as hydrocephalus awareness month! We apologize for the rough edit and the low volume of Representative Howell.  September might be over, but as most of our fans know, we fight hydrocephalus every day of the year! #Hydrocephalus #PHF https://youtu.be/qQAbsybgEDc