'Hello, and thank you for considering a silent auction donation for Cure Kinley & Kennedy! Our family is going through the unimaginable – 2 of our 3 daughters have been diagnosed with an ultra-rare lysosomal storage disorder called GM1 Gangliosidosis. There is currently no treatment or cure for GM1, and it is always fatal in children. Our girls will slowly regress in their development and, eventually, lose their ability to walk, talk, and eat. Ultimately, it will take their lives. Kinley is 8 years old and has the kindest heart. She wants to be a doctor or nurse when she grows up and loves silly jokes. Her favorite joke is “what do you call a camel with three humps? Pregnant!” Kennedy is 5 years old and is the undisputed princess of the family. She can always be found in a poofy dress dancing around and singing. She is witty and makes the funniest comments, and loves being both a big and little sister. Since their diagnosis in June 2020, we have been on a mission to bring awareness to GM1 and other rare diseases. Given the limited population, very little attention and funding is given to rare disease research and development. Yet thousands of families are living the same experience we are – a fatal diagnosis with very few (if any) prospects for treatment or hope for a cure before it’s too late. In late 2020, we had the fortune of having both Kinley and Kennedy accepted into the only gene therapy clinical trial for GM1. There is no telling what, if any impact the treatment will have on them, but we do know that only the grassroots support of our community has made this trial, and any future ones, possible. We thank you for your consideration in supporting our cause in advancing research and development for GM1 and other rare diseases. Every dollar raised from this event will go directly to the Cure GM1 Foundation, an organization committed to raising awareness and funding to discover treatment options and potential cures for all those effected by this devastating disease. Best, The Harrisons Kyle, Kylie, Kinley, Kennedy, and Kieran https://www.otfarvada.com Try Us For FREE! Orangetheory Fitness is the leading fitness gym in Arvada, CO. Trainer-Led Group workouts and Heart-Rate-Based- Training make us a health studio with results. Address: 8031 Wadsworth Blvd., Studio A-2 Arvada, Colorado, CO 80003. Call/text 303-647-1515 for a free trial and 30-Day Quit FREE Guarantee.'
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