DC Lemonade Stand Raises More Than $1K for Toddler With Rare Disease - NBC4 Washington

DC Lemonade Stand Raises More Than $1K for Toddler With Rare Disease

Hope for Annabel aims to raise $4 million to fund a cutting-edge treatment for a rare neurological disorder

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    Lemonade Stand Raises $1K for Toddler With Rare Disease

    Annabel isn't yet 3 years old, but suffers from a rare neurological disease called AHC. Her community rallied around her on Saturday to raise fund research into her treatment. (Published Sunday, July 29, 2018)

    Annabel hasn't yet celebrated her third birthday, but she's already battling a rare neurological disorder that doesn't have a cure or effective treatment.

    Fortunately, she has a community and family helping to turn lemons into lemonade. Literally.

    Friends and family gathered in Palisades Water Park in Northwest D.C. on Saturday for the Hope for Annabel lemonade stand fundraiser. Georgetown Cupcakes donated dozens of treats to be sold, and lemonade cost $2 a cup.

    The crew raised $1,089 to help fund research into Annabel's illness, the family posted on Instagram.

    That's a hefty haul for a lemonade stand, but it's a far cry from the $4 million the family hopes to raise to develop a cure for disease that affects one in every 1 million people.

    Annabel struggles with a genetic disorder called Alternating Hemiplegia of Childhood, or AHC. According to the National Institutes of Health, AHC causes episodes of temporary paralysis. The paralysis eventually subsides, but the disease can also cause severe cognitive problems and brain degeneration.

    AHC is a painful, potentially deadly disease that causes Annabel to choke multiple times a day and leads to frequent hospitalization. It's also very rare: Annabel is one of 300 children in the U.S. diagnosed with AHC, and one of three kids in the world with known to have her specific genetic mutation, according to the Hope for Annabel website.

    "With so few AHC patients, Annabel’s hope for a cure is limited: there simply is not enough research or enough funding underway to find a cure in time to change her life," the Hope for Annabel website says.

    Left with few good options, Annabel's parents, Nina and Simon Frost, say they struck out to raise the money needed to develop a gene therapy treatment.  They launched a non-profit called Hope for Annabel and document their journey on Instagram.

    Pioneering a cutting-edge treatment is a long and expensive process that requires the development of the therapy, testing on mice and clinical trials. The whole process will cost about $4 million, the Hope for Annabel website says.

    Hope For Annabel aims to raise $300,000 in the coming year. That sum is expected to cover the initial development and pre-clinical research.

    The family says they the development of a gene therapy for AHC will give other kids a path towards a cure for similar diseases.

    You can learn more about Annabel and her family's fight for a cure to AHC on her website.

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