Ocean County Assemblyman’s bill to help those with rare diseases, advances
It was about a year and a half ago that Allie and Jonna Crocker joined me in the newsroom discussing their Jersey Shore non-profit that helps other kids/teens like them who are battling rare diseases.
Having a rare disease can come with expensive medical bills or families diverting money to pay those bills and trying to figure out how to pay for other necessities.
Allie and Jonna are Howell High School students and sisters who began the non-profit Fighting H.A.R.D (Having A Rare Disease) to help children with rare diseases and chronic illnesses at the Jersey Shore.
The Fighting H.A.R.D. Foundation came to be after Allie (now 18-years old) became ill earlier in her youth with Crohn’s Disease, Juvenile Rheumatoid Arthritis and Anxiety.
It was then that one of her doctors instructed her to find a foundation that could provide the all around support she needed.
While there are some organizations who provide assistance to children with certain rare diseases, the Crocker's couldn't find one that supported all rare diseases.
That's when 'The Fighting H.A.R.D. Foundation' was born at a time when just Allie was sick but it would soon be something her younger sister Jonna (now 17-years old) needed just as much.
Jonna became ill with gastroparesis and SMA Syndrome.
As they continue to impact the lives of many Jersey Shore families and those beyond, they send out care packages to those suffering with a rare disease "to let them know they're not alone" and they help financially assist more than two-dozen families in Monmouth and Ocean Counties.
The financial assistance comes in great need for families who are not getting as much coverage from their insurance company.
They also hold fundraisers, awareness day and plan activity nights for those in the rare disease community and beyond.
Well, flash forward to now and it looks like help for Allie and Jonna and many others like them could soon see financial and medical assistance.
A bill introduced by Ocean County Assemblyman Ron Dancer which would create a Rare Disease Advisory Council has just advanced through an Assembly Panel.
Dancer said his bill (A4016) would establish a 20-member rare disease advisory council to examine the issues facing those diagnosed with a rare disease through a comprehensive study and help the state government better understand the barriers faced by the community and better serve patients.
“Someone who is diagnosed with a rare disease shouldn’t have to jump through hoops to receive proper medical treatment,” Dancer said in a statement. “With the creation of an advisory council, we will develop policy recommendations and best practices to share with state decision-makers that can improve the lives of those in the rare disease community.”
Dancer says the Covid-19 coronavirus pandemic has also added a reason to pass this bill.
"Given the detrimental impact the coronavirus pandemic is having, the council may be the most qualified to research its effects on people with rare diseases and potentially highlight much needed solutions. The coronavirus pandemic has shined a light on the need to conduct a thorough study of current treatment plans and legislative policies that affect the treatment of rare diseases,” Dancer said. “This council would help state departments and agencies assist those affected by a rare disease with critical and possibly life-saving information.”
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