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>>

  • Port Authority’s $90 Million Improvement Plan

    Port Authority’s $90 Million Improvement Plan

    Thursday, July 24 2014 10:34 AM EDT2014-07-24 14:34:14 GMT
    At the latest Port Authority board meeting, Executive Director Patrick Foye announced that there are new plans to spend $90 million to improve the bus terminal. The much needed renovations will start by cleaning the bathroom lavatories and improving cellphone and Wi-Fi service throughout the terminal. Recently, commuters have been extremely boisterous about their discontent with Port Authority’s conditions including bus service in and out of the station. 
    At the latest Port Authority board meeting, Executive Director Patrick Foye announced that there are new plans to spend $90 million to improve the bus terminal. The much needed renovations will start by cleaning the bathroom lavatories and improving cellphone and Wi-Fi service throughout the terminal. Recently, commuters have been extremely boisterous about their discontent with Port Authority’s conditions including bus service in and out of the station. 
  • Christie Campaigning For Some Republicans, But Not All

    Christie Campaigning For Some Republicans, But Not All

    Thursday, July 24 2014 10:21 AM EDT2014-07-24 14:21:09 GMT
    On Monday Governor Christie was working on behalf of the Republican Governor’s Association promoting a GOP primary candidate for the gubernatorial race in Connecticut where he was asked if he will also be campaigning for Rob Astorino who will be the Republican candidate running for Governor of New York against current Governor Andrew Cuomo.
    On Monday Governor Christie was working on behalf of the Republican Governor’s Association promoting a GOP primary candidate for the gubernatorial race in Connecticut where he was asked if he will also be campaigning for Rob Astorino who will be the Republican candidate running for Governor of New York against current Governor Andrew Cuomo.
  • StubHub Security Breach

    StubHub Security Breach

    Thursday, July 24 2014 10:20 AM EDT2014-07-24 14:20:32 GMT
    StubHub, which is a website that provides services for buyers and sellers for tickets to sporting events, concerts, and other live entertainment events, has been hacked. StubHub is getting a lot of bad press, but the site is really the victim here. The hackers have hacked accounts from other sites, and then used that information to get into the StubHub accounts.
    StubHub, which is a website that provides services for buyers and sellers for tickets to sporting events, concerts, and other live entertainment events, has been hacked. StubHub is getting a lot of bad press, but the site is really the victim here. The hackers have hacked accounts from other sites, and then used that information to get into the StubHub accounts.
  • Local NewsLocal NewsMore>>

  • Suffolk County jail warden is highest-paid muni worker in NY

    Suffolk County jail warden is highest-paid muni worker in NY

    Thursday, July 24 2014 6:48 PM EDT2014-07-24 22:48:14 GMT
    New York State NewsNew York State News
    The Empire Center for Public Policy reports 1,803 local government employees outside of New York City have been paid more than Gov. Andrew Cuomo's $179,000 salary in the past year. The report from the fiscally conservative group for the year ending March 31 shows 47 of the 50 highest-paid municipal employees working for police departments or sheriff's offices and each taking home more than $250,000.
    The Empire Center for Public Policy reports 1,803 local government employees outside of New York City have been paid more than Gov. Andrew Cuomo's $179,000 salary in the past year. The report from the fiscally conservative group for the year ending March 31 shows 47 of the 50 highest-paid municipal employees working for police departments or sheriff's offices and each taking home more than $250,000.
  • Manhattan nursery school's sanitizing machine keeps air clean

    Manhattan nursery school's sanitizing machine keeps air clean

    Thursday, July 24 2014 6:47 PM EDT2014-07-24 22:47:17 GMT
    All of us feel the same way about "cooties": Eww. At the Goddard School on the Upper West Side, a high-tech machine is keeping "cooties" out of the classroom. "This is the latest and then most effective sanitization method available today," says Bill Swan, the owner of the Goddard School. He purchased the ZONO Sanitech for his school about six months ago. The machine is the size of a double refrigerator and uses oxygen to kill viruses and bacteria.
    All of us feel the same way about "cooties": Eww. At the Goddard School on the Upper West Side, a high-tech machine is keeping "cooties" out of the classroom. "This is the latest and then most effective sanitization method available today," says Bill Swan, the owner of the Goddard School. He purchased the ZONO Sanitech for his school about six months ago. The machine is the size of a double refrigerator and uses oxygen to kill viruses and bacteria.
  • NYC's pickup basketball games moving indoors

    NYC's pickup basketball games moving indoors

    Thursday, July 24 2014 5:54 PM EDT2014-07-24 21:54:18 GMT
    Believe it or not this, some say New York's outdoor basketball courts are a dying entity. Even Rucker Park in Harlem -- where Dr. J and countless others honed their skills -- used to be standing room only all times of the day. Now there's plenty of room to stand on most days.Basketball programs like one at Chelsea Piers are gaining popularity. That means the place to hoop it up for many appears to be indoors.
    Believe it or not this, some say New York's outdoor basketball courts are a dying entity. Even Rucker Park in Harlem -- where Dr. J and countless others honed their skills -- used to be standing room only all times of the day. Now there's plenty of room to stand on most days.Basketball programs like one at Chelsea Piers are gaining popularity. That means the place to hoop it up for many appears to be indoors.
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