Jennie Riley is the founder of Hope for Anna, a Facebook page dedicated to sharing her family’s experience with harlequin ichthyosis and raising awareness, and Harlequin Divas, an organization that supports others with harlequin ichthyosis.
When Anna was born with harlequin ichthyosis, Jennie had little knowledge of the skin disorder. People began asking for updates on Anna and her condition, so Jennie decided to start a Facebook page to share updates, but this page exploded and has helped grow awareness of harlequin ichthyosis, build community with others around the world who have ichthyosis, and has given hope and brought joy to so many around the world touched by Anna’s life and her story.
One of the only ways to treat harlequin ichthyosis is by spending a few hours a day in a microsilk bath or using a microbubble machine in the bathtub. Jennie founded Harlequin Divas as a way to help other families and individuals with ichthyosis buy a microsilk bathtub or a microbubble machine – which usually run around $5,000.00 each. Anna herself spends a couple of hours everyday in a microsilk bath and she and her mom wanted to help others get one too. They’ve raised over $20,000 and have helped 4 people get a microsilk bathtub or a microbubble machine – and they continue to raise money everyday to help others around the world with harlequin ichthyosis.
Jennie joins the 1 Girl Revolution podcast to share her own life story, she talks about her children, and the moment she found out that Anna had Harlequin Ichthyosis. Jennie shares more about this rare genetic disorder and her own family’s journey with it through Anna, what she’s learned along her own journey, how the “Hope for Anna” page started and what she’s doing to raise awareness and to help others with harlequin ichthyosis, and what led her to start her Harlequin Divas and what they’re doing to support others with harlequin ichthyosis. And so much more!
You don’t want to miss this powerful and inspiring episode of the 1 Girl Revolution podcast! Listen below.
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For more information on Jennie, Anna, and Harlequin Divas, please visit their website.