September 1st Marks the Start of the First Ever “National Hydrocephalus Awareness Month” in the United States!

MEDIA CONTACT:
Kim Illions
President
Pediatric Hydrocephalus Foundation, Inc.
(732)634-1283
kim@HydrocephalusKids.org

Attention: News Editors
FOR IMMEDIATE RELEASE

September 1st Marks the Start of the First Ever “National Hydrocephalus Awareness Month” in the United States!

The effort led by the Pediatric Hydrocephalus Foundation, Inc. to have Congress designate September as “National Hydrocephalus Awareness Month” is being realized today, as September 1st starts the first ever “National Hydrocephalus Awareness Month.”

In addition to raising awareness about Hydrocephalus, H. Res. 373, which passed at the end of July, is a call to action:

Whereas public awareness, professional education, and scientific research regarding hydrocephalus should increase through partnerships between the Federal Government, health care professionals, and patient advocacy groups, such as the Pediatric Hydrocephalus Foundation;

Whereas these public-private partnerships would ensure that individuals suffering with hydrocephalus and their families are empowered with educational materials, informed about the latest research, have access to quality health care, and are able to advocate for increased research and funding in order advance the public’s understanding of the condition, improve the diagnosis and treatment of hydrocephalus, and one day, find a cure; and

“We are so happy that we were able to get this done for this September. The PHF has only been in existence for 8 months and to have this accomplishment, which took 3 months from start to finish, is pretty amazing, and shows the strength, dedication and commitment from the Hydrocephalus community”, said Kim Illions, President of the PHF, Inc.

Michael Illions, the National Director of Advocacy for the PHF, Inc. added that “The response from Washington was great. Everyone we met with as we were building support, was interested to learn just how serious and common Hydrocephalus is. The hundreds and hundreds of phone calls, emails, letters and faxes from parents, family and friends within the Hydrocephalus community certainly opened up some eyes and made Congress take notice and action on the Resolution.”

“National Hydrocephalus Awareness Month” will be celebrated on September 13th, as the PHF, Inc. holds their signature event at the Roosevelt Park in Edison, NJ. The PHF 2009 WALK & Family Fun Day will be attended by over 300 people.

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.

Pediatric Hydrocephalus Foundation, Inc. Introduces First Official Support Group

For Immediate Release
Contact: Kimberly Illions
Sunday, August 23, 2009
(732) 634-1283
http://www.HydrocephalusKids.org
kim@hydrocephaluskids.org

Pediatric Hydrocephalus Foundation, Inc. Becomes Official Sponsoring Organization of JFK Medical Center’s Pediatric Hydrocephalus Support Group

Woodbridge, NJ – The Pediatric Hydrocephalus Foundation, Inc. is pleased to announce and introduce their first official support group in the Country; held at the JFK Medical Center in Edison, New Jersey.

While in existence for over 2 years now, the Pediatric Hydrocephalus Support Group has been without official outside organizational support or guidance. With the support group now falling under the leadership of the Pediatric Hydrocephalus Foundation, the PHF will work with the Hospital to grow the group, help coordinate the meetings and arrange for speakers. More importantly, with the hard economic times affecting the Hospital industry; the PHF, Inc. will provide financial support to ensure the continuation of the meetings.

Pediatric Hydrocephalus Foundation President Kimberly Illions said “We are honored to Co-sponsor this Support Group with JFK Medical Center. This has been a longtime goal of the PHF, and we look forward to adding this type of Support Group in hospitals all around the Country.”

Michael Illions, the National Advocacy Director for the Pediatric Hydrocephalus Foundation, added “These groups are a tremendous benefit to the families dealing with this condition and this support system gives them a chance to meet and learn from other families, sharing experiences and hearing from medical experts from the Hydrocephalus Community.”

The Pediatric Hydrocephalus Foundation, Inc. has made a remarkable impact since it’s inception in January 2009; starting with authoring the recently passed House Resolution designating September as “National Hydrocephalus Awareness Month”, and adding State Chapters in Missouri and California, which will carry the mission statement of the PHF, Inc. in these States.

The mission of the Pediatric Hydrocephalus Foundation is to educate the community by raising the level of awareness about this incurable brain condition. The PHF will also provide support to the families, friends and children who are diagnosed with Hydrocephalus.

The PHF will raise money for and work with the medical community in searching for a cure and additional treatment options for those with Hydrocephalus.

Additionally, the PHF will advocate on behalf of the members of the Hydrocephalus community and work with policy makers at the State and Federal level to raise awareness and push for more research and support in our fight against Hydrocephalus. The PHF will be holding fundraising events to accomplish the goals stated above.

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Videos: Congresswoman Michele Bachmann (MN-06) & Congressman Leonard Lance (NJ-07) Discuss National Hydrocephalus Awareness Month, (H. Res. 373), on the Floor of the House of Representatives

PHF’s press statement regarding passage of H. Res. 373, and September officially being declared National Hydrocephalus Awareness Month, appears below this post.

A few days before the vote and eventual passage of H. Res. 373, several members of the House of Representative, rose in favor of the Resolution. One of them was the Sponsor of the Resolution, Congresswoman Michele Bachmann from Minnesota, who read a letter on the Floor of the House written by PHF, Inc. Board Member Michelle Janson, regarding her child Ally, about Hydrocephalus; (Have the tissues standing nearby for this one!)

The second features Congressman Leonard Lance from the 7th Congressional District in New Jersey, where Michael, Kimberly & Cole Illions live.

House Passes Resolution Declaring September National Hydrocephalus Awareness Month

PRESS RELEASE

House Passes Resolution Declaring September National Hydrocephalus Awareness Month

For Immediate Release
Contact: Kimberly Illions
(732) 634-1283
http://www.HydrocephalusKids.org
kim@hydrocephaluskids.org

September is now National Hydrocephalus Awareness Month!!

Woodbridge, NJ – When the Pediatric Hydrocephalus Foundation, Inc. was formed in January of
this year, there was two clearly defined goals; 1) Through raising money and awareness, help
“Fund a Cure” for Hydrocephalus and 2) Lobby Congress to pass a Resolution designating the
month of September “National Hydrocephalus Awareness Month.”

In just 6 months, one goal has already been accomplished. Yesterday, the House of
Representatives voted, and passed the Pediatric Hydrocephalus Foundation authored H. Res. 373; designating the month of September as “National Hydrocephalus Awareness Month.”

The passage of this National Resolution answers the dreams of countless thousands of those who suffer from Hydrocephalus and their families. With news of the Resolution passing, members of the Hydrocephalus community from around the Country were filled with joy and excitement.

Michael Illions, the National Director of Advocacy for the PHF, Inc. and father to 4 year old Cole, said “The PHF, Inc. was honored to lead this effort, and with the help of the PHF community, we were able to see this dream become a reality in only 3 months, and now September will forever be known as ‘National Hydrocephalus Awareness Month.’”

“We will treasure this day forever! My 4 year old daughter, Carly Jade, and all other families living with the condition, deserve a month dedicated solely to Hydrocephalus. Carly is perfect, a beautiful typical adorable little girl, with some delays. The image doctors left in my mind still haunt me today. If I would’ve known then what I know now, we would’ve been spared a great deal of pain. But now, this Resolution will inform others that Hydrocephalus is okay, your child will be perfect just as they should be,” said PHF State Director from Missouri Shannon Sommers.

Missouri’s Sara Gilliam, mother to 18 month old Owen, said “Having a month dedicated to raising awareness for Hydrocephalus means so much to our family. Hopefully this will put an even bigger spotlight on our need for a cure.”

“My son openly speaks of his Hydrocephalus with family and classmates, educating them on his condition and needs. He was proud to go to the State House to request September as Hydrocephalus Awareness month last year. To have this become National not only raises awareness for this illness but also raise self-esteem of our children that suffer this affliction. They will know their voices are heard and people know them,” said Kirsti Heatter, a New Jersey mother to 9 year old Maxwell.

Dawn Ramirez of New York, said “As a nurse and a mother, I am so grateful that September has become Hydrocephalus month. Raising awareness and encouraging research is so important to help find a cure for my daughter Natalie, and other children and adults around the world.”

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Pediatric Hydrocephalus Foundation, Inc. Introduces Two State Chapters

PRESS RELEASE

Pediatric Hydrocephalus Foundation, Inc. Introduces Two State Chapters

For Immediate Release
Contact: Kimberly Illions
(732) 634-1283
Tuesday, July 21, 2009
http://www.HydrocephalusKids.org kim@hydrocephaluskids.org

Parents From Missouri & California Join the PHF, Inc. In Battle to ‘Fund a Cure’ for Hydrocephalus

Woodbridge, NJ – The Pediatric Hydrocephalus Foundation, Inc. is pleased to announce and introduce their first two State Chapters to the PFH, Inc. family; Missouri & California.

California State Director Bridget Roberts wants to give back and help fund a cure for Hydrocephalus, “My son Aiden developed Hydrocephalus within his first few weeks of life. His first shunt was placed at 5 weeks old. Sitting in the ICU at Children’s Hospital Oakland several weeks ago made me look around at all of these children suffering from the same thing Aiden was at that very moment and I realized that these little children big and small are my heroes.”

The new Missouri State Director, Shannon Sommers & her husband Jason, share a similar story; “Our daughter Carly Jade is a thriving, adorable 4-year old! Doctors diagnosed her with Hydrocephalus when I was just 18 weeks pregnant. In a matter of minutes, our lives changed. My husband and I were unfamiliar with the condition. We had many questions, but Doctors had few answers. I needed someone, something to reach out to, but the resources weren’t there, until now, thanks to the Pediatric Hydrocephalus Foundation!”

“We are so thankful to be a part of this incredible organization. Our goal here in Missouri is to educate families and doctors that having Hydrocephalus is okay. I want everyone to see Carly’s beautiful face and know everything will be okay. And with the help of the community we will fight with all our might to fund a cure!”

Kim Illions, the President of the Pediatric Hydrocephalus Foundation, Inc. and mother of a 4 year old boy with Hydrocephalus, added that “Our vision at the PHF has always been to “fund a cure for hydrocephalus” and to spread that funding across the country. We are so proud and excited to welcome our two newest chapters, Missouri and California, and we look forward to raising money, awareness and advocacy for Pediatric Hydrocephalus with these two great states!”

The mission of the Pediatric Hydrocephalus Foundation is to educate the community by raising the level of awareness about this incurable brain condition. The PHF will also provide support to the families, friends and children who are diagnosed with Hydrocephalus.

The PHF will raise money for and work with the medical community in searching for a cure and additional treatment options for those with Hydrocephalus.

Additionally, the PHF will advocate on behalf of the members of the Hydrocephalus community and work with policy makers at the State and Federal level to raise awareness and push for more research and support in our fight against Hydrocephalus. The PHF will be holding fundraising events to accomplish the goals stated above.

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