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>>

  • Sexting Ring Uncovered Involving Six Teens & Four NJ Towns

    Sexting Ring Uncovered Involving Six Teens & Four NJ Towns

    Tuesday, September 2 2014 3:52 PM EDT2014-09-02 19:52:20 GMT
    One girl's threat to post another girl's nude photos on Instagram led to an investigation that uncovered a teen sexting ring involving six juveniles and four New Jersey towns. Little Falls Detective Sergeant James Briggs said that the two girls that initiated the investigation allegedly dated the same boy at separate times. The boy then passed on nude photos that he received from one of the girls onto the other.
    One girl's threat to post another girl's nude photos on Instagram led to an investigation that uncovered a teen sexting ring involving six juveniles and four New Jersey towns. Little Falls Detective Sergeant James Briggs said that the two girls that initiated the investigation allegedly dated the same boy at separate times. The boy then passed on nude photos that he received from one of the girls onto the other.
  • NJ Doctor Offering Alternative To Obamacare?

    NJ Doctor Offering Alternative To Obamacare?

    Tuesday, September 2 2014 1:24 PM EDT2014-09-02 17:24:21 GMT
    Doctor Alieta Eck is running for U.S. Congress in the 12th district as a Republican. She's recently made headlines due to a free clinic that she created back in 2003 with her husband called the Zarephath Health Center. The clinic is a 501C3 run by volunteers and funded through donations. The average cost per patient that Dr. Eck sees is about $13.Some people are referring to this center as an alternative to Obamacare.
    Doctor Alieta Eck is running for U.S. Congress in the 12th district as a Republican. She's recently made headlines due to a free clinic that she created back in 2003 with her husband called the Zarephath Health Center. The clinic is a 501C3 run by volunteers and funded through donations. The average cost per patient that Dr. Eck sees is about $13.Some people are referring to this center as an alternative to Obamacare.
  • Is The Boston Bomber’s Family In North Bergen A Threat?

    Is The Boston Bomber’s Family In North Bergen A Threat?

    Tuesday, September 2 2014 11:31 AM EDT2014-09-02 15:31:20 GMT
    The widow of the alleged Boston Marathon bomber, Katherine Russell, has been living in North Bergen with the sisters of her former husband, Bella and Ailina Tsarnaev. Neighbors in the area have just recently been made aware of her presence in town, but not all of them are happy about it.
    The widow of the alleged Boston Marathon bomber, Katherine Russell, has been living in North Bergen with the sisters of her former husband, Bella and Aliana Tsarnaev . Neighbors in the area have just recently been made aware of her presence in town, but not all of them are happy about it.
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