MANCHESTER-Manchester PBA 246 is inviting community members and businesses to help support its Fifth Annual Golf Outing, scheduled for Monday, May 5 at Pine Barrens Golf Club in Jackson.

Each year, Manchester PBA 246 selects a charitable cause to support with funds raised by the Golf Outing. The primary beneficiary of the 2014 event is the Pediatric Hydrocephalus Foundation, a nonprofit organization committed to raising awareness and urging greater research of the brain condition which affects more than one million Americans.

“All of the causes Manchester PBA 246 has supported throughout the years have been well deserving and we’re proud to help the Pediatric Hydrocephalus Foundation this year,” said Manchester PBA 246 President Paul Bachovchin.

Manchester PBA 246 Golf Outings serve as the organization’s cornerstone fundraising effort and have raised nearly $20,000 each year for charitable causes since 2010.
The proceeds are split between a primary beneficiary—in years past Children’s Specialized Hospital and Parents of Autistic Children received donations—and the other causes supported by Manchester PBA 246 throughout the year.

“I’m proud of the fact that our annual golf outing is looked upon by other organizations as a well run and successful event,” Officer Bachovchin said.

Many levels of sponsorship opportunities are available and range from $25 to $3,000. Registration forms and a detailed list of sponsorship levels are available through the Manchester Township Police Facebook page, www.Facebook.com/ManchesterPolice.

For more information or to become a sponsor, contact Officer Bachovchin at 732-657-2009, Ext. 6356 or PBachovchin@Manchestertwp.com.

Pine Barrens Golf Club is located at 540 South Hope Chapel Road, Jackson, NJ 08725.

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Patients and their caregivers are using health information software on their smartphones and tablets to manage their health and wellness, particularly among those with rare or less common conditions, those who are chronically ill, and those with service-connected conditions.

Use of these technologies has allowed patients and their caregivers to easily integrate disease management activities into their daily lives.

Recent actions to regulate mobile health apps and other health IT software have created confusion in the market about what technologies may be regulated next. We are concerned that this might inhibit development of these products or dramatically increase their price to consumers.

S.2007, the PROTECT Act, would clarify the regulation of medical device and health information technology, an important first step in updating how new health information systems and software are regulated to help ensure that products are safe and that patients and caregivers have access to these innovative technologies.

If you would like to add your organization to our PROTECT Act endorsement letter, please contact mike@hydrocephaluskids.org by Wednesday, April 9.

Please Download/Print the Letter in Support of S.2007

Rare Disease Report:

The Pediatric Hydrocephalus Foundation (PHF) was established by Kim and Michael Illions to raise awareness of this brain condition and provide support to the families living with hydrocephalus.

Combining both of those activities, the foundation will be in Washington this August to educate legislators about hydrocephalus and the foundation will provide assistance to all families wanting to attend this annual event.

PHF is also heavily involved in the community and has multiple fundraisers throughout the year, including ones at Detroit Tiger games.

Hydrocephalus — also referred to as water on the brain — is a lifelong condition in which persons have excessive accumulation of cerebrospinal fluid (CSF) within the ventricles of the brain. Current treatment is usually to surgically insert a shunt that drains the excess CSF to other areas of the body (usually the abdominal region). During a person’s lifetime, multiple surgeries are usually necessary to replace or fix the shunts.

Join us on March 20th @ 7:30pm EST as Canadian Author Stefania Moffatt discusses her Hydrocephalus-themed book “Headstrong” and the 10 year old girl who is the inspiration for the book.

About Headstrong

Headstrong is about a fun-loving girl who likes to make people laugh. When Ellie was in her mommy’s tummy the doctors discovered a cyst on her brain, which turned out to be something called hydrocephalus. The book documents Ellie’s operations soon after birth to her life today as a “regular” kid.

Headstrong is a great book for kids of all ages as it demonstrates how you can overcome a challenge at any age and to accept and understand what makes people unique.

The book can also prepare kids for doctor and hospital visits.

Q & A session will follow.

The call is FREE. Please register to reserve your spot for this very special Conference Call.

My name is Nicole and I am 24. I have Spina Bifida… more specifically, Myelomeningocele with Hydrocephalus.

When I was growing up, I didn’t really have that many friends that I could relate to or who could relate to me. I felt that it was because of my disability. My parents and my older brother were the only people who I could turn to for guidance and advice on things, but they really did not understand what I was going through with my disability or just life in general.

I found it very difficult to succeed in school, both because I had a learning disability and because I was in and out of school due to check-ups or having yet another surgery. This made it hard to make friends. In addition, when I would have a complication from my Spina Bifida they would make fun of me.

When I was younger, I felt that other children either didn’t like me or did not have the same interests because I was in a wheelchair. I felt that people who saw my wheelchair automatically thought I could not do anything in life whatsoever… that I would just be in a wheelchair and have someone take care of me for the rest of my life. Granted I do have the help of my parents, but it really is not 24/7. As I am getting older I am learning that people just do not have the knowledge about Spina Bifida or are misinformed. All they see is a wheelchair. But it is more than just a chair! We are strong human beings because of what we have had to go through both medically and socially.

Over the past year or two I have really embraced my abilities and have tried to figure out ways I can help others learn more about Spina Bifida. I have found great support groups via Facebook. Hydrocephaluskids.org is also a great outlet for those of us who have Spina Bifida because of the sense of community. We all know what the other person is going through, and we can lend a shoulder to lean on and ears to listen if needed. It’s a great place to make friends with individuals who share a common interest. We need that community to provide a safe social outlet!