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>>

  • Testing Begins On Whale Pulled Out Of NJ Harbor

    Testing Begins On Whale Pulled Out Of NJ Harbor

    Tuesday, April 22 2014 11:08 AM EDT2014-04-22 15:08:29 GMT
    Yesterday, the huge whale that washed up in the New York Harbor underwent a necropsy in a health lab in Ewing, New Jersey to begin tests to see exactly what caused this massive mammal to die. NJ Animal Diagnostic Lab Pathologist Dr. Laura Coffee explained how important these tests are and how this is not an easy process.
    Yesterday, the huge whale that washed up in the New York Harbor underwent a necropsy in a health lab in Ewing, New Jersey to begin tests to see exactly what caused this massive mammal to die. NJ Animal Diagnostic Lab Pathologist Dr. Laura Coffee explained how important these tests are and how this is not an easy process.
  • New Books Aimed To Educate People On Child Abuse Symptoms

    New Books Aimed To Educate People On Child Abuse Symptoms

    Tuesday, April 22 2014 11:07 AM EDT2014-04-22 15:07:40 GMT
    The book “No Secrets Between Us”, written by Rose Morrisroe, focuses on child abuse and is intended to aid parents, educators, and children in recognizing the signs in order to help solve this problem. Senator John McCain wrote a letter to Senator Tom Harkin to move this process along and help get kids the help that they need. Morrisroe explains how she was able to get the government involved in her conquest to resolve child abuse.
    The book “No Secrets Between Us”, written by Rose Morrisroe, focuses on child abuse and is intended to aid parents, educators, and children in recognizing the signs in order to help solve this problem. Senator John McCain wrote a letter to Senator Tom Harkin to move this process along and help get kids the help that they need. Morrisroe explains how she was able to get the government involved in her conquest to resolve child abuse.
  • A Mother’s Sticky Situation

    A Mother’s Sticky Situation

    Tuesday, April 22 2014 11:03 AM EDT2014-04-22 15:03:39 GMT
    Down on her luck and without a job or childcare, Shenesha Taylor had to make a questionable decision to leave her babies in the car while she went on a job interview. She was later arrested for felony child abuse. The story gained national news headlines around the county and when New Jersey’s Amanda Bishop heard about Taylor’s story she decided to reach out and help this mother.
    Down on her luck and without a job or childcare, Shenesha Taylor had to make a questionable decision to leave her babies in the car while she went on a job interview. She was later arrested for felony child abuse. The story gained national news headlines around the county and when New Jersey’s Amanda Bishop heard about Taylor’s story she decided to reach out and help this mother.
  • Local NewsLocal NewsMore>>

  • Caesars enters New York casino competition

    Caesars enters New York casino competition

    Tuesday, April 22 2014 10:52 PM EDT2014-04-23 02:52:22 GMT
    Caesars Entertainment entered the competition to open a casino in upstate New York on Tuesday with a proposal to build a $750 million complex 50 miles north of New York City. The complex would include a casino, a hotel and a meeting space and would be located in Woodbury, in Orange County. The Las Vegas-based Caesars, which operates 52 casinos around the world, has submitted a $1 million casino license application fee to state gambling regulators.
    Caesars Entertainment entered the competition to open a casino in upstate New York on Tuesday with a proposal to build a $750 million complex 50 miles north of New York City. The complex would include a casino, a hotel and a meeting space and would be located in Woodbury, in Orange County. The Las Vegas-based Caesars, which operates 52 casinos around the world, has submitted a $1 million casino license application fee to state gambling regulators.
  • Hoax 'swatting' call sends dozens of cops to LI home

    Hoax 'swatting' call sends dozens of cops to LI home

    Tuesday, April 22 2014 10:43 PM EDT2014-04-23 02:43:53 GMT
    Heavily armed police officers descended on a home in Long Beach, Long Island, Tuesday afternoon thinking they might find a grisly murder scene. Instead they found a terrified woman who had no clue what they were talking about and her teenaged son playing video games. "We received a phone call from a gentleman who stated he had just shot his mother and his brother," Long Beach Police Commissioner Michael Tangney said. "Unfortunately, this is a terrible national problem for law enforcement."
    Heavily armed police officers descended on a home in Long Beach, Long Island, Tuesday afternoon thinking they might find a grisly murder scene. Instead they found a terrified woman who had no clue what they were talking about and her teenaged son playing video games. "We received a phone call from a gentleman who stated he had just shot his mother and his brother," Long Beach Police Commissioner Michael Tangney said. "Unfortunately, this is a terrible national problem for law enforcement."
  • NYPD Twitter hashtag backfires

    NYPD Twitter hashtag backfires

    Tuesday, April 22 2014 9:14 PM EDT2014-04-23 01:14:35 GMT
    An NYPD plan intended to better connect with the community seems to have backfired a bit. The police department asked its twitter followers to share pictures of themselves with New York City police officers using the hashtag "myNYPD." Some did share nice pictures, but others not so much.Some of the first pictures posted showed regular citizens standing with very friendly looking police officers.
    An NYPD plan intended to better connect with the community seems to have backfired a bit. The police department asked its twitter followers to share pictures of themselves with New York City police officers using the hashtag "myNYPD." Some did share nice pictures, but others not so much.Some of the first pictures posted showed regular citizens standing with very friendly looking police officers.
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 | Terms of Service | Ad Choices