Health & Wellness

Joey Hollywood Inspires Awareness Day for Rare Childhood Disease

8b34083f7b443a774ddf_sompixjoeyhollywood.jpg
Assemblyman Jack Ciattarelli (R-16th) with Bridgewater resident Joey Hollywood who has a rare genetic condition that causes muscle tissue to turn into bone.
8b34083f7b443a774ddf_sompixjoeyhollywood.jpg

TRENTON, NJ – Assemblyman Jack Ciattarelli (R-16th) is the sponsor of a resolution to raise awareness for a very rare genetic condition that causes muscle tissue to turn into bone, with most of its victims 10 and younger.

The resolution designates April 23 as Fibrodysplasia Ossificans Progressiva Awareness Day.

“I first learned about this disorder when I met Joey Hollywood, an inspirational young guy from Bridgewater who has become the face of the disease in our state,” said Ciattarelli, a Hillsborough resident.

Sign Up for E-News

“University of Penn researchers identified the FOP gene on April 23, 2006. That’s why we want to make that date Fibrodysplasia Ossificans Progressiva Awareness Day.”

The disorder is generally diagnosed in children younger than age 10. The progressive symptoms include mutation of the body’s connective tissue and muscle causing joints to become frozen and producing a “second skeleton” of bone-like growth.

“Designating a permanent awareness day is a crucial next step,” said Gary W. Whyte, an advocate dedicated to educating people about FOP and raising money for research. “I have been spreading the word and fundraising for the past 16 years, but FOP is still a relatively unknown disease.”

The condition is unpredictable, and even a seemingly minor injury – a pulled muscle or a sprained ankle – can trigger the development of painful and permanent “bones.” Even surgery leads to more severe reactions from the body rather than bringing relief to the patient.

“Penn University’s research has led to some exciting developments for treatment,” said Ciattarelli. “Public awareness will add momentum to the effort, helping extend the lives of sufferers and maybe eventually leading to a cure.”

TAP Into Another Town's News:

You May Also Be Interested In

Sign Up for E-News

South Brunswick-Cranbury

South Brunswick and Cranbury Police Blotter

August 9, 2017

Sponsored by Reilly's Collision Center in Monmouth Junction. Click here and scroll down for the latest updates and alerts from South Brunswick and Cranbury Police.

See the most recent messages from South Brunswick Twp Police Department, powered by Nixle.

Edison Police Seek Help Finding Missing 14-Year-Old

June 22, 2018

EDISON, NJ - A 14-year-old Edison girl who ran away from home on May 3 has yet to be found and police are asking anyone with information about  to come forward.

Edison detectives are leading a statewide search for the girl, Jalaysia Staplar-Evans. They said they believe she could be staying with friends or acquaintances in Newark or the Essex County area, said Edison Police Lt. Robert ...

Rutgers Takes Over New Brunswick Police Dispatch Service

NEW BRUNSWICK - Rutgers University will provide the city’s police dispatching services in a move that New Brunswick says will cut costs and put an end to dispatcher shortages that resulted in officers doing the job.

The city’s 12 current dispatchers will be laid off at the end of the day on June 30, and Rutgers will supply dispatchers as of July 1 under an agreement that city ...

New Brunswick Civic League Leader Still Looking for New Challenges After 48 Years at Helm

NEW BRUNSWICK, NJ - After 48 years of leading the charge for change in New Brunswick, Dr. C. Roy Epps can still be found quietly working on weekends in The Civic League of Greater New Brunswick offices.

The tireless commitment of the 77-year-old President and CEO of this non-profit has helped provide residents access to a variety of health, housing and education services over the ...

More than the Fourth of July, Make it a Star Spangled Week in the Long Beach Island Region of NJ

June 20, 2018

STAFFORD AND LONG BEACH ISLAND - Summer 2018 starts now, so time to enjoy the beauty of the Jersey Shore. As families and friends gather for the summer holiday, there is plenty of options to assist in rounding out July 4 vacation and getaways.

With July 4 falling on a Wednesday, there are many events surrounding the holiday.

The award winning Surf and Sip Brew Trail itinerary is available ...

Applications to Rutgers Jumps Nearly 10 Percent; Increase from Out-of-State Students

NEW BRUNSWICK, NJ - Applications to Rutgers University this year increased 9.4 percent over last year, university President Robert Barchi told the Board of Governors at a meeting this week.

The university received nearly 45,000 applications this year, Barchi said.

That included a 20 percent increase in the number of students from out-side New Jersey applying to Rutgers, the university ...

Susan G. Komen North Jersey Increases Program Funding by 15% for 2018-2019 and Awards 13 Grants to 11 Local Community Non-Profit Organizations

June 21, 2018

 

Susan G. Komen North Jersey announced that it will award a total of 13 grants to 11 local community non-profit organizations in its nine-county service area for 2018-2019, with an increase in total program funding at 15% year over year. Since its founding in 1997, Komen North Jersey has awarded nearly $19 million to local community programs in nine North Jersey counties and has directed ...

The ESCNJ Offers Innovative Software To Strengthen School Transportation

   New software promising greater speed and efficiency for school transportation departments is now available through the Educational Services Commission of New Jersey (ESCNJ).

   The software is the result of a two year collaboration between the Princeton based Artha Systems, an international supplier of business management software, and the ESCNJ.

“The software ...

Watson Coleman Introduces Resolution Acknowledging the Failures of the War on Drugs

As the House prepares to vote on more than 20 bills aimed at fighting the opioid epidemic over the next two weeks, Rep. Bonnie Watson Coleman (D-NJ) announced a resolution that seeks parity in the treatment of drug use and addiction and a formal apology for the War on Drugs. H.Res. 933 expresses the sense of Congress that the War on Drugs failed, and calls out the disparate treatment of ...

Small Business Ownership vs. Entrepreneurship

Written by: Samuel K. Burlum, Investigative Reporter and author of The Green Lane, a syndicated column, Published on 6/18/2018

Tags: Business, Community, Crowdfunding, Economy, Entrepreneurship, Finance, Small Business

Source: So, which are you – a Small Business Owner or an Entrepreneur? We compare the similarities and differences between the two, so you can ...