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5th annual “Walk to Beat Hydrocephalus” held Saturday in Easthampton
September 29, 2019 by PHF
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EASTHAMPTON, Mass. (WWLP) – 21-year-old Westhampton resident Isabella Sacharcyzk has been struggling with the rare brain condition, Hydrocephalus, her entire life.
“Hydro” is a condition in which fluid accumulates in the brain, and sometimes causes brain damage. Isabella has had 22 brain surgeries. Hydro has affected her ability to walk and learn.
“I struggle with headaches everyday,” said Isabella Sacharczyk. “My ability to walk has gone up and down, I now wear leg braces.”
Isabella is the Director of the Massachusetts Chapter for the Pediatric Hydrocephalus Foundation. Her organization held the Walk and 5K Saturday outside the Mary Ann’s Dance Studio on Main Street.
This was the fifth “walk to beat hydrocephalus” in Easthampon and the main goal was to raise awareness and money to find better treatment and hopefully a cure.
“We look around we don’t know who is affected,” Michelle Walden of Deerfield. “There needs to be more awareness, more funding.”
“Last night I couldn’t sleep, just because I was so excited and I love seeing the community come together helping to create a common goal to eventually finding a cure to hydrocephalus, said Sacharczyk.”
All of the money raised will help fund hydrocephalus research at the Boston Children’s Hospital. More than 15 thousand dollars was raised at last year’s walk and 5K.
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Westhampton woman with hydrocephalus helping others
November 19, 2018 by PHF
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WESTHAMPTON, MA (WGGB/WSHM) — As a parent, one of the toughest thing you’d ever go through is hearing your child has a rare condition.
One Westhampton woman has used her diagnosis as a defining moment for the rest of her life.
“My parents, after I was born…were told I would never talk, walk, see, hear. They were advised to put me in a home. Thank God they didn’t,” said Isabella Sacharczyk.
Like many 20 year olds, Sacharczyk is in college studying for her future career, but she also has hydrocephalus.
“Hydrocephalus is water on the brain. It’s an incurable condition where the cerebral spinal fluid doesn’t drain. I have hydrocephalus,” Sacharczyk explained.
After her initial diagnosis, Sacharczyk has proven the doctors wrong each step of the way.
“I graduated from Hampshire Regional and am now in college. I’ve made it my mission in life to become a medical researcher to help find a cure for hydrocephalus,” Sacharczyk noted.
Sacharczyk is instrumental in the organization Pediatric Hydrocephalus Foundation, where she is co-director for the Massachusetts chapter.
One of the groups biggest events is a fundraising walk.
“This past walk, we raised a little over $5,000. We do a walk here and an event in New York. Combined, every year, we have been able to donate about $10,000 to Boston Children’s Hospital,” Sacharczyk said.
Many in Westhampton are supportive of her efforts.
“Outlook Farms is absolutely incredible. They are gracious enough to allow me to put a donation jar near their register. I picked up the jars right before the walk and we had $150 to add to the total we raised for the walk,” Sacharczyk added.
We wanted to help, so on behalf of Western Mass News and Diamond RV, Jacob presented Sacharczyk with a check for $500.
“Every dollar gets us closer to a cure. I feel that we are close,” Sacharczyk said.
CLICK HERE for more information on Sacharczyk’s mission and CLICK HERE to learn more about the Pediatric Hydrocephalus Foundation.
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Westhampton woman’s fundraiser helps towards pediatric brain condition
September 26, 2018 by PHF
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WESTHAMPTON, Mass. (WWLP) – A courageous young Hampshire County woman is helping to find a cure to a brain condition that’s afflicted her since birth.
Bella Sacharczyk of Westhampton led her fourth fundraising walk for the Pediatric Hydrocephalus Foundation Saturday, on her 20th birthday.
Bella has undergone brain surgery 23 times since she was an infant to battle this incurable condition that has threatened her speech and ability to walk.
“I do this walk not for me probably won’t help me, but I’m doing it for the generation coming up,” Bella told 22News.
The money raised during Saturday’s walk will add to the thousands of dollars already donated to the Boston Children’s Hospital for Hydrocephalus research.
Bella is currently a biology student at Holyoke Community College. She plans on moving on to attend UMass.
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US Congressman Leonard Lance Attending the September 13th PHF WALK 2009
September 11, 2009 by PHF
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MEDIA CONTACT:
Kim Illions
President
Pediatric Hydrocephalus Foundation, Inc.
(732)634-1283
kim@HydrocephalusKids.org
*Update: US Congressman Leonard Lance Attending the September 13th PHF WALK 2009
Pediatric Hydrocephalus Foundation Gears up for 2009 Statewide WALK to “Fund a Cure for Hydrocephalus”
Congressman Leonard Lance, (NJ-7th), has confirmed his attendance for this Sunday’s PHF WALK 2009, at Roosevelt Park in Edison, NJ at 11:00am. The Hydrocephalus community owes Congressman Lance a great deal of gratitude for his leadership and commitment to see H. Res. 373 pass in time for this year’s WALK. The Resolution, which designates the month of September as “National Hydrocephalus Awareness Month, passed this past July before Congress adjourned for the summer recess.
Cole Illions is a small boy with a huge smile and two parents, Mike and Kim, who dote on him. He also has a little known incurable brain disease known as Hydrocephalus, an accumulation of fluid in the brain that affects an estimated one million Americans of all ages. One in 500 children born this year will be diagnosed with Hydrocephalus.
This is why Mike and Kim Illions, along with 3 other families, have founded the Pediatric Hydrocephalus Foundation, Inc. They have become tireless advocates for their children and others living with Hydrocephalus. The Pediatric Hydrocephalus Foundation authored H. Res. 373 designating the month of September as “National Hydrocephalus Awareness Month.” This resolution was recently passed unanimously by the US Congress in July 2009. Mike & Kim’s Congressman Leonard Lance was one of the first to Co-Sponsor H. Res. 373 and helped to get it passed in time for this year’s WALK.
On Sunday, September 13th, 2009 at Roosevelt Park in Edison, NJ they will be joined by friends, family, and people living with Hydrocephalus along with well wishers in a 2 mile walk to raise awareness and funds. Registration begins at 10:30am and the walk will start at 11:00am although it is recommended to register ahead of time. This event will be attended by over 300 people.
This year’s WALK has the pleasure of Bill Evans of ABC Channel 7 News as its Honorary Chairperson. There will be live music, entertainment for the kids, free food, soft drinks and a visit from the NJ Devil’s Dancers. The WALK will also have various items up for auction and raffle.
To register for the WALK and/or donate to the PHF, Inc., go to: www.HydrocephalusKids.org and click on “Register” or “Donate”.
All proceeds will benefit the Pediatric Hydrocephalus Foundation, Inc, the nation’s largest organization dealing solely with the support, education, advocacy and funding for research of Pediatric Hydrocephalus.
For more information please contact Kim Illions at kim@Hydrocephaluskids.org or (732) 634-1283.
