NJ Rare Diseases - New York News

NJ Rare Diseases

Posted: Updated:
Glen Ridge, New Jersey (My9NJ) - Finding out that your child has been diagnosed with a disease is devastating. Oftentimes there are support groups offered that help you connect with people who may be going through the same situation as you.

However, imagine that your child is diagnosed with an extremely rare disease that is found in fewer than 1 in 200,000 Americans nationwide, many of those families can feel completely alone. That is how Julie Raskin felt when she found out that her son Ben was diagnosed with congenital hyperinsulinism, a rare disease that causes the overproduction of insulin in newborn babies.

Ben is now a 17-year old senior at Glen Ridge High School who still suffers the consequences of this rare condition. This includes suffering from epilepsy, being legally blind and checking his insulin multiple times a day after having his pancreas removed as part of his treatment.

“Now I’m a type 1 diabetic. And I check (my sugar) on average like at least four times a day. Once before breakfast, once before lunch, once at dinner and once before bed,” he said.

Rare diseases impact between 25 and 30 million patients nationwide and Julie explained how decisions by the state and federal government greatly determine how these children will be treated.

“Insurance is very much determined by the state that you live in and now with the affordable care act, each state is implementing its own state insurance exchanges. So the kind of plan you have, what’s in the plan, is kind of determined by the state,” she said.

Julie has even addressed the senate health committee to get help with her son’s problem through the organization NJ Rare. Through her involvement with NJ Rare, Julie hopes to strengthen the profile of rare diseases and give a voice to those with a rare condition.

“Here in New Jersey we have a special kind of mission, I think, for the whole rare disease community of the world,” she said.


Watch Chasing New Jersey weeknights at 10pm on My9 and don’t forget to like us on Facebook!

  • Chasing New JerseyMore>>

  • Hoboken Cracking Down On Uber Car Services

    Hoboken Cracking Down On Uber Car Services

    Tuesday, September 2 2014 9:10 AM EDT2014-09-02 13:10:53 GMT
    The town of Hoboken, New Jersey is cracking down on Uber cars driving in and picking up passengers in the city. Uber is an app that you can use to request a car service to pick you up, but city officials say they are not licensed to operate in town. Marcus Enriquez was actually thrown out of an Uber car by a Hoboken police officer. He said he was on his way to work outside of the Hoboken taxi stand when a cop knocked on the window, kicked him out of the car and ticketed the Uber driver.
    The town of Hoboken, New Jersey is cracking down on Uber cars driving in and picking up passengers in the city. Uber is an app that you can use to request a car service to pick you up, but city officials say they are not licensed to operate in town. Marcus Enriquez was actually thrown out of an Uber car by a Hoboken police officer. He said he was on his way to work outside of the Hoboken taxi stand when a cop knocked on the window, kicked him out of the car and ticketed the Uber driver.
  • Backlash Over 9-Year-Old Uzi Accident That Killed A Shooting Instructor

    Backlash Over 9-Year-Old Uzi Accident That Killed A Shooting Instructor

    Friday, August 29 2014 10:34 AM EDT2014-08-29 14:34:27 GMT
    The tragic accident of a 9-year-old New Jersey Girl who shot and killed a Las Vegas shooting instructor while shooting a fully automatic Uzi has gained national attention. The young girl was learning to shoot when the gun recoiled hitting the instructor in the head and killing him. This story has once again opened the debate about appropriate use of guns among children.
    The tragic accident of a 9-year-old New Jersey Girl who shot and killed a Las Vegas shooting instructor while shooting a fully automatic Uzi has gained national attention. The young girl was learning to shoot when the gun recoiled hitting the instructor in the head and killing him. This story has once again opened the debate about appropriate use of guns among children.
  • Town Passes Recording Ordinance After Cop Caught Dissing Obama

    Town Passes Recording Ordinance After Cop Caught Dissing Obama

    Friday, August 29 2014 10:33 AM EDT2014-08-29 14:33:59 GMT
    Steven Wronko is a Helmetta, New Jersey resident who recently taped local police officer, Richard Recine, saying that he doesn't have to follow the U.S. Constitution because President Obama doesn't. “Obama has decimated the friggen Constitution so I don't give a damn, cause if he doesn't have to follow the Constitution, we don't have to,” Recine is heard saying on tape.
    Steven Wronko is a Helmetta, New Jersey resident who recently taped local police officer, Richard Recine, saying that he doesn't have to follow the U.S. Constitution because President Obama doesn't. “Obama has decimated the friggen Constitution so I don't give a damn, cause if he doesn't have to follow the Constitution, we don't have to,” Recine is heard saying on tape.
  • Local NewsLocal NewsMore>>

  • Long Island beaches reopen to bathing

    Long Island beaches reopen to bathing

    Tuesday, September 2 2014 10:08 AM EDT2014-09-02 14:08:19 GMT

    Health officials say six Long Island beaches that were closed for one day have reopened to bathing. The Nassau County beaches were closed Monday due to storm water runoff that could negatively impact bacterial levels. The beaches were: Laurel Hollow Beach, Morgan Beach, North Hempstead Beach Park, Sea Cliff Village Beach, Tappen Beach and Theodore Roosevelt Beach.

    Health officials say six Long Island beaches that were closed for one day have reopened to bathing. The Nassau County beaches were closed Monday due to storm water runoff that could negatively impact bacterial levels. The beaches were: Laurel Hollow Beach, Morgan Beach, North Hempstead Beach Park, Sea Cliff Village Beach, Tappen Beach and Theodore Roosevelt Beach.

  • 1 tube of Lincoln Tunnel closed after accident

    1 tube of Lincoln Tunnel closed after accident

    Tuesday, September 2 2014 10:02 AM EDT2014-09-02 14:02:27 GMT
    One of the tubes of the Lincoln Tunnel has been closed after a chain-reaction accident involving a New York-bound jitney bus and two other vehicles. Port Authority of New York and New Jersey spokesman Steve Coleman says four people were reported injured in the accident in the center tube at about 8:30 a.m. Tuesday.
    One of the tubes of the Lincoln Tunnel has been closed after a chain-reaction accident involving a New York-bound jitney bus and two other vehicles. Port Authority of New York and New Jersey spokesman Steve Coleman says four people were reported injured in the accident in the center tube at about 8:30 a.m. Tuesday.
  • Dispute over reclining seat diverts flight, again

    Dispute over reclining seat diverts flight, again

    Tuesday, September 2 2014 8:21 AM EDT2014-09-02 12:21:27 GMT
    Delta photoDelta photo
    A Delta Air Lines flight from La Guardia Airport to West Palm Beach, Florida, was diverted to Jacksonville because of a dispute between passengers over a reclining seat. Delta reportedly says the flight was diverted Monday night when a woman got into an argument with a passenger behind her when the woman was trying to recline her seat while the other passenger was trying to sleep on the tray table.
    A Delta Air Lines flight from La Guardia Airport to West Palm Beach, Florida, was diverted to Jacksonville because of a dispute between passengers over a reclining seat. Delta reportedly says the flight was diverted Monday night when a woman got into an argument with a passenger behind her when the woman was trying to recline her seat while the other passenger was trying to sleep on the tray table.
Powered by WorldNow
Didn't find what you were looking for?
All content © Copyright 2000 - 2014 Fox Television Stations, Inc. and Worldnow. All Rights Reserved.
Privacy Policy | New Terms of Service What's new | Ad Choices