Read more at: https://html.com/attributes/img-width/>
6-Year-Old Alabamian Lillian Alberts Selected as 2022 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition
January 10, 2022 by PHF
Filed under Uncategorized
Comments Off on 6-Year-Old Alabamian Lillian Alberts Selected as 2022 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition
6-Year-Old Alabamian Lillian Alberts Selected as 2022 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition
Lily was born July 14, 2015 with her twin brother James. Her parents received the news at their anatomy scan that not only did Lily’s twin have Spina bifida, but both twins had congenital hydrocephalus. At three days old, she along with her brother received their first VP shunt placement. At ten days old Lillian got to come home with her brother and begin learning and growing. There was a slight bump in the road at seven weeks old, when Lily had her first shunt malfunction, which ended up being a 20 day hospital stay with two infections and four surgeries.
Thankfully Lily has had no issues with her shunt since! She has overcome much, including being diagnosed with epilepsy and dealing with some physical challenges. Yet through the help of the Drs and specialists at Children’s of Alabama, Early Intervention, Therapists, teachers, friends, and family, Lily has thrived and become an energetic, fun loving 1st grader.
Lillian, who is called Lily, loves reading. She tries reading everything she can, from books to road signs. She is a true Disney fan, and enjoyed a Wish Trip granted by Magic Moments of Alabama to Disney World shortly before the Covid shut down. She was able to meet her favorite Characters, Rapunzel and Flynn Ryder. Currently you can find her singing to the music of Encanto at the top of her lungs in her room. She also loves watching football with her family and cheering on her favorite team, the Alabama Crimson Tide!
2022: National Ambassadors of Hydrocephalus Awareness
November 12, 2021 by PHF
Filed under Uncategorized
Comments Off on 2022: National Ambassadors of Hydrocephalus Awareness
The PHF is looking for one boy and one girl to serve as our National Spokesperson for our 2022 National Hydrocephalus Awareness Campaign.
Our two National Ambassadors will be featured in marketing and promotional materials all through the year, and especially in September 2022 with National Hydrocephalus Awareness Month & our National Conference in Washington DC.
The National Ambassadors & their families will also receive a two night complimentary stay @ the Embassy Suites Hotel for the 2022 PHF Issues & Action Hydrocephalus Conference in Washington, DC on Thursday August 4th & Friday August 5th.
We will select ONE boy and ONE girl from all entries received. Read the rules carefully!
1) Submit one picture of your nominee*, between the ages of newborn to 19 years old, with their name, D.O.B., and location. (By submitting a picture, you authorize the PHF to use the picture for promotional purposes).
NOTE: Failure to comply with Rule #1 will disqualify that entry.
2) Only one entry per child will be accepted. Siblings with Hydrocephalus can be entered separately.
3A) PHF Board of Directors & State Chapter Directors are eligible to participate and enter their child.
3B) Past winners are NOT eligible to participate.
4) All entries will be featured on the PHF website & Facebook.
5) IMPORTANT: Please participate in this campaign only if you are willing to attend the PHF’s National Hydrocephalus Conference in Washington, DC in August if your entry wins.
TO ENTER:
EMAIL your entry to mike@hydrocephaluskids.org (Entries sent ANY other way will NOT be accepted or acknowledged).
Contest ends December 31st, 2021 & both winners will be announced on Sunday, January 2nd, 2022 in the evening via video announcement.
Check out the picture galleries of everyone who has been entered:
Join Hydro Warriors for annual fundraiser
September 7, 2020 by PHF
Filed under Uncategorized
Comments Off on Join Hydro Warriors for annual fundraiser
The annual fundraising walk to help Hydro Warriors like Clara Shanks will take place next week in Sandusky.
Although the Fourth Annual Hydrocephalus Warrior Walk on Saturday, Sept. 12 will have a different look this year, because of COVID-19, the purpose remains the same: raising money to find a cure for hydrocephalus.
The venue for the “Walk a Mile” event, which last year raised more than $25,000, is the Sandusky High School track. However, organizer Heather Shanks, of Carsonville, said the venue could change but she won’t know if that happens until next Sept. 7.
Heather is Clara’s mom. She’s also a director for Michigan Pediatric Hydrocephalus Foundation.
The money raised at the event will go to the foundation for education and research grants to find better treatment, and a cure, for hydrocephalus, a life-long condition that requires surgery to remove a build-up of fluid on the brain.
More than one million Americans, from newborns to seniors are affected by the condition.
Clara, who is four years old, was born with hydrocephalus.
“This event fuels our passion for a cure for hydrocephalus,” said Shanks, a teacher at Croswell-Lexington Schools.
“The support we, and the many Hydrocephalus Warriors that attend, receive is unparalleled. Each year we are reminded that…we are remembered, prayed and cared for. We look forward to spreading awareness and funds each year.”
Registration is from 9:15-9:45 a.m. and the official start time for the walk is 10 a.m.
However, this is an open house-style event, so can you come anytime until noon to take part.
“In order to mitigate the number of individuals walking (at any one time), we’re hoping people can come any time between 10 and noon to walk their mile with us,” said Shanks.
The original plans called for carnival games, face painting and a bake sale, but they’ve been eliminated due to COVID-19.
But there will be music provided by the Sandusky Arts Council, and a serve yourself concession stand stocked with food that is individually wrapped and donated by Gordon Food Services, Sysco, Marz, and Bob and Jamie’s Grill.
The cost for the walk is $25. Children ages 12 and under are admitted free. Raffle tickets can be purchased, and if participants leave prior to the drawings they can pick up their prize at Bob and Jamie’s Grill.
For updates on the event, including a possible change in venue, check the Michigan Pediatric Hydrocephalus Foundation Facebook page and click on events.
Source:
Boy honored as ambassador of Hydrocephalus Awareness
September 5, 2020 by PHF
Filed under Uncategorized
Comments Off on Boy honored as ambassador of Hydrocephalus Awareness
Nine-year-old Jaden Stallbories has endured and survived more in his life than most people much older, with all the stitches, and now national accolades, to prove it.
Since the age of 3, Jaden has suffered from a condition called Hydrocephalus, a disease in which excessive fluid gathers in the brain, abnormally widening spaces in the brain and placing potentially harmful pressure on brain tissues. It is a disease which affects approximately one of every 500 births. Due to lack of advancements in treatment, many are left unable to lead full and productive lives, and if left untreated can be fatal.
Described as a “warrior and champion,” Jaden has survived four life-threatening brain surgeries while fighting the incurable disease.
Jaden was recognized this week as part of the Spring Hill Board of Mayor and Aldermen’s August regular meeting, attending virtually through Zoom, where he was presented a proclamation by Mayor Rick Graham.
“Throughout years of treatment and surgeries, this brave warrior has continued to keep his sense of humor, his sweet disposition, a smile on his face and is always at the ready to cheer on his favorite hockey and football team,” the proclamation states.
“Jaden Stallbories, being recognized for his strength and courage has been chosen as the male, 2020 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition, has brought this condition to the attention of the City of Spring Hill, Board of Mayor and Alderman; and I, Rick Graham, Mayor of Spring Hill, do hereby honor Jaden Stallbories for his determination, strength and inspiration while facing this tremendous challenge and proclaim the month of September as Hydrocephalus Awareness Month.”
Jaden is one of only two children selected to serve as the 2020 National Ambassador for Hydrocephalus Awareness by the Pediatric Hydrocephalus Foundation (PHF).
“If you look up the definition of survivor, there’s a good chance you would see a picture of Jaden featured,” the PHF released in a statement. “Everybody that has met Jaden will tell you all about his sense of humor, and how he is such a sweet little boy. Throughout everything that he has endured, he still smiles and laughs. He has never let anything dim his light, and that is why he is our hero.”
As an ambassador, Jaden has been featured in advertisement campaigns and promotional materials throughout the year, all in an effort to help raise the level of awareness and education about Hydrocephalus in the U.S. He and his family had just returned from Washington D.C. after attending the Pediatric Hydrocephalus F’s Annual Issues & Action Hydrocephalus Conference.
“The city is very proud of you and appreciate all you are doing for the cause, and we really appreciate this,” Graham said to Jaden and his mother, Carissa. “If we were all there live, Jaden, we’d all be standing up right now applauding. I don’t know how we could do that on video, but please understand we are.”
As Graham finished his remarks, all in attendance unmuted their mics and gave a rousing applause in Jaden’s honor.
“We are so grateful that Jaden was picked to be the 2020 Ambassador. It means so much to us to have the opportunity to be involved with the PHF, and to do this with Jaden,” Jaden’s parents released in a statement.
For more information about Hydrocephalus, visit www.hydrocephaluskids.org.
Source:
Tennessee boy suffering from incurable brain condition selected as national ambassador
January 17, 2020 by PHF
Filed under Uncategorized
Comments Off on Tennessee boy suffering from incurable brain condition selected as national ambassador
SPRING HILL, Tenn. (WZTV) — A Tennessee boy suffering from an incurable brain condition has been chosen as a 2020 National Ambassador of Hydrocephalus Awareness.
Hydrocephalus is a condition where excessive fluid gathers in the brain, widening spaces and placing potentially harmful pressure on brain tissues. According to the Pediatric Hydrocephalus Foundation, Hydrocephalus occurs in approximately one of every 500 births. Untreated, it could be fatal.
Jaden Stallbories of Spring Hill was diagnosed with the condition in 2014 at just 3 years old. He has survived four life threatening brain surgeries due to the fluid buildup in the brain.
“If you look up the definition of survivor, there’s a good chance you would see a picture of Jaden featured,” the Pediatric Hydrocephalus Foundation said. “Everybody that has met Jaden will tell you all about his sense of humor, and how he is such a sweet little boy. Throughout everything that he has endured, he still smiles and laughs. He has never let anything dim his light, and that is why he is our hero.”
The 8-year-old was selected as one of two children across the country to serve as this year’s 2020 National Ambassador of Hydrocephalus Awareness. Jaden will join 3-year-old Kaylie Mae Lingor of Texas in his ambassador role to spread awareness for the illness as well as be featured in a national advertising campaign.
Jaden seems excited to represent; “I am really happy to be a part of something that is for hydrocephalus.”
Jaden and his family will travel from Spring Hill to Washington, DC in August for the organization’s Annual Issues & Action Hydrocephalus Conference.
“We are so grateful that Jaden was picked to be the 2020 Ambassador. It means so much to us to have the opportunity to be involved with the PHF, and to do this with Jaden,” the child’s parents released in a statement.
For more information on the condition, click here.
Source:
