BPAN Videos & Resources
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Duets Across America is proud to support and share resources from fellow 501(c)(3) organizations advancing awareness and funding for BPAN research. One such partner, Don’t Forget Morgan, is a nonprofit dedicated to raising funds that go directly to scientific research and therapeutic development for children affected by BPAN. Donations to Don’t Forget Morgan are tax-deductible as allowed by law.
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Duets Across America
Meet My Sister! | Dancing w/ Duet — Lake Anthony Show Clip
SYDNEY'S SONG
"January 24, 2017 was the day our life changed. Our daughter Sydney was diagnosed with an extremely rare neurodegenerative disorder. There are less than 1,000 cases reported worldwide. BPAN (Beta-Propeller Protein-Associated Neurodegeneration) is a type of NBIA (Neurodegeneration Brain Iron Accumulation). BPAN is spontaneous and not a hereditary disease. It is X linked which means that it is mainly found in girls, there are only a few boys cases reported. People affected by BPAN typically have childhood global developmental delays, intellectual disability, an ataxic walk, multiple seizure types, slow cognitive gains, and little to no speech development. Typically around the age of 25 BPAN individuals begin a sudden onset of regression and will develop muscle spasticity involuntary movement, cognitive decline, Parkinsonism, and Dementia. She will slowly lose EVERYTHING she has worked so hard to gain."