Howell sisters raising money for kids battling rare diseases

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You may have seen or heard their story by now, but it's worth revisiting over and over again because their mission is that important and they are that inspiring.

Allie and Jonna Crocker, of Howell, joined me in the newsroom discussing their Jersey Shore non-profit a couple years back to discuss their Fighting H.A.R.D. (Having A Rare Disease) non-profit foundation which helps other kids/teens like them who are battling rare diseases, an unknown and overlooked field in certain circles, but they are bringing the issues this community is battling to light.

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 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 16-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.

Now, they're asking you to join them in a virtual fundraiser coming up this month, that's also FREE to register for and participate in.

It's a Virtual Run!

"People can sign up to walk or run 2 miles, a 5k, 8 miles, or 28 miles over the span of 8 days (Feb 21-28), and input their times and distances onto our run website," Allie Crocker tells Townsquare Media News. "When people sign up, they can also choose to become a fundraiser and help us raise money for these kids and families battling rare diseases and chronic illnesses!"

Allie adds that to date, they've raised over $8,000 before the official running of the races and they have over 125 people signed up.

While a free event, they're encouraging donations as your means allow, which in turn will help others battling a rare disease and their families across Monmouth and Ocean Counties.

When you sign up, you can also get a virtual bib.

If you're not in running shape or don't feel comfortable going out for a run or are unable physically, it's all okay as well.

"If you're not a walker or runner you can sign up to relax and just show support for the cause," Allie Crocker said.

You can follow Vin Ebenau on Twitter and Instagram and email news tips to vin.ebenau@townsquaremedia.com.

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