For Immediate Release
Contact: Kimberly Illions
Monday, November 9th, 2009
(732) 634-1283
http://www.HydrocephalusKids.org
kim@hydrocephaluskids.org
PRESS RELEASE
Ocean State Joins Growing Nationwide Network
Woodbridge, NJ – The Pediatric Hydrocephalus Foundation, Inc. (PHF) today formally announced Rhode Island as the newest official PHF state chapter, bringing to five the number of chapters nationwide.
“We are thrilled to welcome Rhode Island to the PHF family,” stated Michael Illinois, Vice President and National Director of Advocacy for PHF. “With every new chapter, we move one step closer to our goal of funding and finding a cure for pediatric hydrocephalus.”
RI State Director Rebecca Minasian echoed this goal, explaining her motivation for taking leadership of the new chapter: “Imagine having a child and when she gets sick, has a headache, or just seems not herself, your first thought is taking her to the emergency room. That’s what it’s like for me and many parents of children with hydrocephalus.”
Minasian’s daughter, Caitlin, developed hydrocephalus when she was just a few weeks old as a result of E-coli meningitis. She was born 12 weeks early along with her twin brother and was too small to fight the infection. “My little girl was still under 5 pounds and only 8 weeks old when her first shunt was placed to relieve the pressure,” Minasian shares. When the shunt failed, “[i]n less than 24 hours, she went from playing with her brother to laying in the emergency room fighting for her life. That is how fast many children with hydrocephalus can show symptoms of shunt failure.
“As a result of the hydrocephalus and the brain trauma that occurs with every surgery, Caitlin also has cerebral palsy,” Minasian added. “She endures multiple sessions of physical, occupational, and speech therapy along with therapeutic horse riding to help her achieve her goals. This is all part of the reason I chose to get involved with Pediatric Hydrocephalus Foundation, Inc. and help fund research for the condition.”
Occurring in approximately 1 of every 500 births, hydrocephalus is a condition in which excessive fluid gathers in the brain, abnormally widening spaces in the brain and placing potentially harmful pressure on brain tissues. Because of lack of advancements in treatment, many affected individuals are left unable to lead full and productive lives.
“There are too many children who have daily struggles as a result of this condition,” Minasian noted. “My goal is to hold fundraisers throughout the state to fund research and medical equipment that may help in hydrocephalus-related surgeries. I would also like to help parents and their children [who are] dealing with this complex medical condition connect with others dealing with similar situations.
Rhode Island joins chapters in Missouri, California, Georgia, and New York as well as PHF’s founding chapter in New Jersey.
###
About PHF
The Pediatric Hydrocephalus Foundation, a non-profit 501(c) (3) charitable organization, educates the community by raising the level of awareness about hydrocephalus and provides support to families, friends, and children affected by this brain condition.
The PHF also raises money for and works with the medical community in searching for a cure and additional treatment options for those with hydrocephalus. Additionally, the PHF advocates on behalf of the members of the hydrocephalus community and works with policy makers at the state and federal levels to raise awareness and push for more research and support in the fight against hydrocephalus. All donations are tax-deductible. For more information, visit www.hydrocephaluskids.org.
Michael Illions, the Vice President and National Director of Advocacy for the Pediatric Hydrocephalus Foundation, was interviewed Saturday afternoon on the Jesse Kurtz Radio Show on WIBG-1020AM.
Among the topics discussed in the 18 minute interview include the founding of the PHF, Inc., the National Hydrocephalus Awareness Month effort and goals for 2010.
You can listen to the interview by clicking the logo below or you can save the audio by right-clicking on the logo and choosing “Save Link As”
For Immediate Release
Contact: Kimberly Illions
Monday, November 9th, 2009
(732) 634-1283
http://www.HydrocephalusKids.org
kim@hydrocephaluskids.org
PRESS RELEASE
New York Joins The PHF In Fight Against Hydrocephalus
Woodbridge, NJ – The Pediatric Hydrocephalus Foundation, Inc. is pleased to announce the State of New York as the fourth official PHF, Inc. chapter, joining the recently formed chapters in Missouri, California & Georgia, in addition to the New Jersey founding chapter.
New York’s State Director for the PHF, Cassandra Thew said “This disease needs better funding. We don’t want to just treat it by shunting because this requires a life long commitment to brain surgeries and all that comes along with it. We had no idea what we were looking at when we were told of Brayden’s diagnosis. We want to give him, and any other child with this incurable brain condition the best future possible. We’re hoping that by using the PHF and our State Chapter in New York, we can reach out to other families and help them understand about Hydrocephalus. With an occurrence rate of 1 in every 500 births, why are we still all alone in this fight?”
Michael Illions, the Vice President and National Director of Advocacy for the Pediatric Hydrocephalus Foundation, Inc. added that “as we continue to grow and find people to work with us like Cassandra and her family in New York and our other State Chapters, we will realize our goal of funding a cure for Hydrocephalus for all our children.”
Cassandra and her family will be interviewed as part of the 5th Annual WHUD 100.7 Children’s Miracle Network Radiothon, which will benefit the Maria Fareri Children’s Hospital at Westchester Medical Center.
The Radiothon will be broadcast live from the lobby of the Children’s Hospital starting November 11th and ending on November 13th. Cassandra, her husband Greg and their son Brayden will be interviewed Friday morning.
The Pediatric Hydrocephalus Foundation, a non-profit 501 (c) (3) charitable organization, educates the community by raising the level of awareness about this brain condition. The PHF provides support to the families, friends and children who are diagnosed with Hydrocephalus.
The PHF raises money for and works with the medical community in searching for a cure and additional treatment options for those with Hydrocephalus. Additionally, the PHF advocates on behalf of the members of the Hydrocephalus community and works with policy makers at the State and Federal level to raise awareness and push for more research and support in our fight against Hydrocephalus. All donations are tax-deductible.
– # –
MEDIA CONTACT:
Kim Illions
President
Pediatric Hydrocephalus Foundation, Inc.
(732)634-1283
kim@HydrocephalusKids.org
FOR IMMEDIATE RELEASE
PHF SPAGHETTI DINNER RAISES OVER $2,000.00 IN EDISON, N.J.
Woodbridge, NJ – Four year old Jeffrey Westdyke of Edison, New Jersey goes to preschool 5 days a week, plays with toys, watches TV, goes camping with the rest of his family and makes yucky faces at most green vegetables. This sounds pretty typical for any four year old.
But Jeffrey Westdyke is not a typical four year old boy. Jeffrey suffers from the incurable brain disease Hydrocephalus. Jeffrey’s mother Jennifer and father Jeff, have joined together with parents of 3 other New Jersey families, who also have a child with Hydrocephalus, to start the Pediatric Hydrocephalus Foundation, Inc.
This past Sunday, November 1st, the Westdyke family hosted a Spaghetti dinner fundraising event to benefit the Pediatric Hydrocephalus Foundation, Inc. The 4 hour event raised over $2,000.00 for the Foundation, as 150 people ate, danced, and purchased merchandise from the 6 vendors who helped sponsor the event.
The PFH, Inc. has raised just under $35,000.00 this year with there various fundraising events and plan to fund research projects dealing with Hydrocephalus while also donating money to New Jersey Hospitals that support Pediatric Hydrocephalus patients.
For information about the PHF, Inc., please go to: www.HydrocephalusKids.org.
The Pediatric Hydrocephalus Foundation, a non-profit 501 (c) (3) charitable organization, educates the community by raising the level of awareness about this brain condition. The PHF provides support to the families, friends and children who are diagnosed with Hydrocephalus.
The PHF raises money for and works with the medical community in searching for a cure and additional treatment options for those with Hydrocephalus.
Additionally, the PHF advocates on behalf of the members of the Hydrocephalus community and works with policy makers at the State and Federal level to raise awareness and push for more research and support in our fight against Hydrocephalus.
All donations are tax-deductible.
For more information please contact Kim Illions at kim@Hydrocephaluskids.org or (732) 634-1283.
PHF, Inc. Spaghetti Dinner 2009
Hosted by:
The Westdyke Family
Sunday, November 1, 2009
2:00pm-6:00pm
Edison Elks
375 Old Post Road
Edison, NJ 08817
Adults: $10
Kids 4-12: $5
Under 4: FREE
Please join us for a fun afternoon of great food, family and friends, while raising awareness and dollars to help “Fund a Cure for Hydrocephalus”
Live Music provided by DJ Lou !!
Various Vendors such as Pampered Chef, 3 Sisters Gourmet,
Silpada Jewelry & Party Lite
Basket Raffle and CASH 50/50
All proceeds will go directly to
Pediatric Hydrocephalus Foundation, Inc., a non-profit 501 (c) 3 charitable organization.
Please RSVP to:
Kim Illions at 732-634-1283 or kai0424@aol.com or Jennifer Westdyke at 732-690-8652 or jwestdyke2@optonline.net
To Donate: www.hydrocephaluskids.org
All donations are tax-deductible
