While it is great to be here to celebrate and recognize a month of ‘Awareness for Hydrocephalus’, the real day of celebration for our children is when we are here one day recognizing a ‘Cure for Hydrocephalus’.

Leonard Lance
Member of Congress

For Immediate Release

Contact: Kimberly Illions
Saturday, June 26, 2010
(732) 634-1283
kim@hydrocephaluskids.org
http://www.HydrocephalusKids.org

PHF’s Rhode Island Chapter Raises Thousands of Dollars in First Fundraising Event

R.I. Spaghetti Dinner Draws over a Hundred People; Raises Thousands of Dollars for Hydrocephalus Research & Awareness

Woodbridge, NJ – The Rhode Island Chapter of the the Pediatric Hydrocephalus Foundation, Inc. (PHF) raised over $3,500.00 at the Spaghetti Dinner, their first ever fundraising event, held in Cranston, R.I. at the Scottish Rite Masonic Center on Saturday June 5th.

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. If left untreated, hydrocephalus would be fatal.

RI State Director Rebecca Minasian, whose young daughter Caitlin suffers from hydrocephalus said; “I am so pleased that so many people were able to attend our first ever fundraiser for the Pediatric Hydrocephalus Foundation. It means so much that I was able to get the Foundation’s name out there and let people know we exist, and how much the PHF is doing to help children living with the condition. I hope to continue this event every year and hopefully with more community support the event will continue to grow.”

The Rhode Island and surrounding area’s business and professional sports community contributed greatly to the success of the event by donating gift certificates, sports memorabilia, and tickets to events that were all used for the silent auction that was held.

In addition to the over 100 people from the Rhode Island area, also in attendance were Cassandra Thew, New York State PHF Chapter Director, and from New Jersey, PHF, Inc. President Kim Illions and Board Member Jennifer Westdyke, who added “Rebecca and family did an amazing job putting together their spaghetti dinner. The food was fantastic and the silent auction was definitely a hit. Jeffrey and I enjoyed meeting everyone and look forward to working together in the future to help raise money & awareness for Hydrocephalus.”

The PHF Rhode Island Chapter will use the money raised to help increase awareness and to fund hydrocephalus research projects within the State of Rhode Island by donating to local hospitals and research facilities that cater to Pediatric Hydrocephalus.

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.

For Immediate Release

Contact: Kimberly Illions
Tuesday, June 15, 2010
(732) 634-1283
kim@hydrocephaluskids.org
http://www.HydrocephalusKids.org

Laurie Berkner Named National Spokesperson for the Pediatric Hydrocephalus Foundation, Inc.

Children’s Musical Artist Laurie Berkner To Be The “Voice” of September’s “National Hydrocephalus Awareness Month” Public Service Announcements To Be Heard In Every State In The Country Sponsored By The PHF, Inc.

Woodbridge, NJ – The Pediatric Hydrocephalus Foundation, Inc. (PHF) today formally announced that children’s musical artist Laurie Berkner of The Laurie Berkner Band will serve as their Celebrity National Spokesperson for this September’s “National Hydrocephalus Awareness Month.”

“We are thrilled to have Laurie Berkner joining us in helping to raise awareness,” stated Michael Illions, Vice President and National Director of Advocacy for PHF. “Laurie Berkner is one of the most recognizable names in the entertainment business to children and is a household name in tens of thousands of homes.”

Laurie will serve as the voice of the Pediatric Hydrocephalus Foundation’s Public Service Announcement for September’s “National Hydrocephalus Awareness Month.” The initiative will have the Berkner recorded PSA be heard on at least one radio station in every State in the Country for the entire month of September. Contracts with radio stations in almost 75% of the States have been finalized for this endeavor.

“I am happy to be a part of raising awareness of Hydrocephalus in the United States during September’s “National Hydrocephalus Awareness Month”, and help children like Cole Illions and so many others who are struggling with this incurable brain condition”, said Laurie Berkner.

You can visit the Pediatric Hydrocephalus Foundation’s website for more information and to check the radio stations from around the Country that are participating in this project.

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.

About Laurie Berkner

Laurie Berkner regularly appears on Nick Jr., a television network aimed at children, in music videos played between programs and on the program Jack’s Big Music Show. Berkner has written two children’s books: Victor Vito and Freddie Vasco, based on her song “Victor Vito”, and Story of My Feelings. She has also put out a video and DVD, We Are…The Laurie Berkner Band; the DVD, has sold more than 400,000 copies since its 2006 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.

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”

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.