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June 29, 2025 55 mins

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In this powerful episode of Rare Connection, we meet Paul, the president of Cure CLCN6 and the father of Paxton, a young boy diagnosed with an ultra-rare visit mutation on the CLCN6 gene.

Paxton’s journey began with developmental delays and years of unanswered questions. After extensive genetic testing, his family finally received a diagnosis—one so rare that few doctors had even heard of it. Today, Paul is leading the charge to raise $1.5 million to fund a life-saving gene therapy that could offer Paxton a chance at a better future.

 Bisit cureclcn6.org for more information.  To donate click the following link to be taken to their Go Fund Me account.  https://www.gofundme.com/f/donate-to-fund-paxtons-critical-gene-therapy?attribution_id=sl:c0d715d3-a026-4505-8dfa-52ec45d605f6&utm_campaign=man_sharesheet_dash&utm_medium=customer&utm_source=copy_link  Cure CLCN6 is a recognized 501c3  

If you are interested in purchasing one of my t-shirts click the link below for my bonfire account.  https://www.bonfire.com/invisible-disability-rare-disease-awareness/

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