Residents Rally To Bring Awareness To Rare Diseases - My9 New Jersey

Residents Rally To Bring Awareness To Rare Diseases

Posted: Updated:
Trenton, New Jersey (My9NJ) - At the state capital last week, people with rare diseases from all over New Jersey came together to raise awareness of the issues and struggles individuals face when they are diagnosed and live with crippling diseases.

One by one, people affected by rare diseases stepped up to the podium to talk about how their lives and families have been impacted.

Kevin Ovitz was the first person to get up and talk about his experience of having both of his daughters diagnosed with Hyperinsulinism. Luckily for the Ovitz family, advancements in modern medicine have allowed his daughters, who both would have been in wheelchairs, to be happy and healthy normal young girls.

“We found the best physicians in the world at children’s hospital in Philadelphia. We planned for that baby’s delivery; you have to excuse me I’m a little emotional because that baby is now a 3-year-old who is sitting in this room right now.”

There are more than 6,000 known rare diseases, and though this sounds like a lot, usually people who have a disease are in a group with very few other cases.

Another woman, Ronnie, with tears in her eyes, pleaded for help for her husband.

“My husband is a CADASIL patient and he’s gotten Medicaid to help him with the expenses of nursing home care which he desperately needs. Now they are telling me they’re taking the Medicaid away from him because he makes approximately $50 more a month in social security,” she explained.

For this illness alone, the diagnosis test costs about $20,000 and care costs $150,000 annually. When she approached Medicaid about giving up the pension which is about $150 a month, they told her that she would be committing Medicaid fraud.

While it’s clear that more has to be done to help these people in need, bringing awareness to rare diseases is a good first step.


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

  • Chasing New JerseyMore>>

  • Sound From NYC Pier Concerts Angering NJ Residents

    Sound From NYC Pier Concerts Angering NJ Residents

    Wednesday, July 30 2014 11:40 AM EDT2014-07-30 15:40:11 GMT
    Some residents of West New York, New Jersey are happy with their beautiful views of Manhattan, but aren’t too happy about the noise that is coming over from the city. Residents who live at the Hudson Club apartment complex at Port Imperial say that the music that reportedly comes from a new concert hall at Pier 97 across the Hudson River in New York City is affecting their quality of life.
    Some residents of West New York, New Jersey are happy with their beautiful views of Manhattan, but aren’t too happy about the noise that is coming over from the city. Residents who live at the Hudson Club apartment complex at Port Imperial say that the music that reportedly comes from a new concert hall at Pier 97 across the Hudson River in New York City is affecting their quality of life.
  • Roxbury Is Stronger Than The Smell

    Roxbury Is Stronger Than The Smell

    Wednesday, July 30 2014 11:39 AM EDT2014-07-30 15:39:45 GMT
    A group of residents from Roxbury, New Jersey, who have been dealing with the Fenimore Landfill and toxic fumes coming off the landfill went down to Trenton yesterday in front of the New Jersey DEP office where they rioted in front of a new billboard the residents had just purchased.The billboard reads “The new ‘common sense’ solution to environmental protection”.
    A group of residents from Roxbury, New Jersey, who have been dealing with the Fenimore Landfill and toxic fumes coming off the landfill went down to Trenton yesterday in front of the New Jersey DEP office where they rioted in front of a new billboard the residents had just purchased.The billboard reads “The new ‘common sense’ solution to environmental protection”.
  • Battle Over Belmar Boardwalk

    Battle Over Belmar Boardwalk

    Wednesday, July 30 2014 11:36 AM EDT2014-07-30 15:36:45 GMT

    The Belmar boardwalk, which was completely destroyed during Superstorm Sandy, is now newly rebuilt and beautiful. 

    The Belmar boardwalk, which was completely destroyed during Superstorm Sandy, is now newly rebuilt and beautiful. 

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