PHF’s Michael Illions’ speech at the National Hydrocephalus Awareness Month Flag-raising Ceremony in Woodbridge New Jersey
September 1, 2010 by admin
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Thank you all for coming and being part of such a special event. While it is due to unfortunate circumstances that we are doing what we do, it is extremely heart-warming to see the support from so many family and friends within the Hydrocephalus Community here tonight to celebrate.
For the first time ever in this Country, a Flag will be flying in honor of “National Hydrocephalus Awareness Month”, and I want to thank the Mayor for being so supportive in our fight against Hydrocephalus. Thanks also goes to the Town Council and the Mayor’s staff for putting this event together and making it such a success.
Let me just add something to show how important it is what we are doing. One of our families who helped create the PHF with us, the D’Oria’s, is unable to join us tonight because they are at the hospital with their 17 year old daughter Adrienne, who is having a Hydrocephalus related brain surgery today. It is her 2nd surgery in the last 6 days.
The question is never IF they will have to go to the hospital for yet another surgery, but WHEN. That is the cold hard reality of what these kids and everyone with Hydrocephalus has to deal with. That culture of despair and what this brain condition does to those with it, needs to be changed.
There is so much more that needs to be done. But the accomplishments that we, the Pediatric Hydrocephalus Foundation, have made in just under 2 years is a strong start, and shows a promising future for our children. We went to Congress and a National Hydrocephalus Awareness Month was passed in the United States. We went back to Congress and we now have a request pending for $4.5 MILLION DOLLARS in Federal funding to the NIH to be used specifically for Hydrocephalus Research, thanks to Congressman Lance’s efforts.
As early as fifty years ago, this brain condition was pretty much a death sentence in this Country, and it still is in other Countries. At some point in the past, we all started this journey not even knowing what the heck Hydrocephalus was, and now, working together, one day we are going to defeat it.
So we continue to what we do; for my son Cole Illions, for my little friends Ally Janson, Jeffrey Westdyke, Derek Fischer & Anthony Pascale in New Jersey; Ben & Drake Mantheiy in Pennsylvania; Brandon Thew & Thomas Mingst in New York; Caitlin Minasian in Rhode Island; Ezekiel Spinks in Georgia; Haley Purdy in Kentucky; Ryan Cole in Maryland; Jack Marquis in Connecticut; Justin Walker in California, who is being raised by his grandparents @ 7 years old, and the list goes on and on.
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’.
Congressman Leonard Lance’s speech at the National Hydrocephalus Awareness Month Flag-raising Ceremony in Woodbridge New Jersey
September 1, 2010 by admin
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Dear Friends:
Thank you very much for your kind invitation to participate in today’s flag-raising ceremony, which marks the 2nd occurrence of National Hydrocephalus Awareness Month. I regret that I am not able to join you this evening.
For too long, too little attention has been paid to Hydrocephalus. While it affects nearly 1 in every 500 births, most people are unaware of this condition. In order to raise awareness of this condition, Congresswoman Michele Bachmann and I passed a Congressional resolution marking September as National Hydrocephalus Awareness Month. Additionally, I have fought for greater funding for the National Institute of Neurological Disorders and Stroke, one of the leaders in the search for a cure for Hydrocephalus.
None of these efforts would have been possible were it not for activists such as Michael and Kim Illions. Most of the best ideas in Washington, DC come from our constituents - Michael, Kim and their son Cole are shining examples of this. Their steadfast advocacy on behalf of all those affected by Hydrocephalus is truly and inspiration, and I want to thank them for all they have done to promote awareness of the condition.
Best personal wishes.
Sincerely,
Leonard Lance
Member of Congress
R.I. Spaghetti Dinner Draws over a Hundred People; Raises Thousands of Dollars for Hydrocephalus Research & Awareness
June 26, 2010 by admin
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Press Release
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.
Laurie Berkner Named National Spokesperson for the Pediatric Hydrocephalus Foundation, Inc.
June 16, 2010 by admin
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Press Release
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.
Pediatric Hydrocephalus Foundation Introduces Rhode Island Chapter
January 20, 2010 by admin
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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.
