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Genomic clinic receives jaw-dropping donation to help patients with rare diseases, but still needs community support

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HUNTSVILLE, Ala. (WHNT) - An anonymous donor has given $1.05 million to establish a fund for patients suffering from rare diseases to afford access to genomic medicine, HudsonAlpha Foundation representatives announced Monday.

The newly-created Hero Fund will help patients in need. WHNT News 19 is told the cost of genome sequencing, which used to help diagnose patients, is $6,500. Understandably, that can be a hard or nearly impossible burden to bear for some families.

"Imagine every day fighting with, I don't know what's wrong with my child. We don't know what to do. I don't know where to go," explained Howard Jacob, Executive Vice President for Genomic Medicine at HudsonAlpha.

Jacob said real heroes are those parents and children who go through that daily. He's hoping the Hero Fund, established by the anonymous donor, will open the door to a diagnosis for families who are having trouble with that $6,500 cost.

"We will have a sliding scale depending on what your income is," explained Lynne Berry, the HudsonAlpha Foundation Executive Director. "[This] reinforces my belief in this community, in the generosity of this community."

Children dressed in superhero costumes gathered at the announcement Monday, which was intentionally made on February 29. The date is recognized as "Rare Disease Day."

Berry said the first $1 million will collect interest at a bank and that interest will be used to help patients. As it grows, more people can be helped.

The remaining $50,000 of the donation can be used this year, but requires a community match.

"We need to raise $50,000 to use the $50,000," Berry explained, "so that's a potential $100,000 to help patients."

"The donor's intent was to help as many patients as possible, so we have been tasked with raising matching funds. Your 'gene-erosity' makes it possible to help those in need."

Now, it's your turn to be a hero.  To support or learn more about "The Hero Fund," click here.

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