Why is the Zebra the symbol of rare diseases? Because…”Sometimes when you hear hoof beats, it really is a Zebra.” Follow fibrinogenaf to see our families story regarding the rare disease that runs in our family: Fibrinogen AF(IB) Amyloidosis.
Please follow @fibrinogenaf on Instagram, Facebook and Twitter for line-up of music as date approaches! T-shirts with the zebra logo will be on sale at the event for $20. All t-shirt sales will benefit the foundation.
In addition to being a father of three daughters and husband to his wife Debbie, Dale Gallaway (1948-2018) was a farmer, a helicopter pilot, and a dedicated angler who felt most at ease near water and on the Texas Gulf Coast. In his 60s, Dale hoped to retire, to live out the rest of his years in relative ease after a lifetime of hard work, having earned a retirement full of deep sea fishing and trips to see his grandchildren. But, shortly after he sold the farm, he started noticing strange and debilitating symptoms.
He would eventually be diagnosed in 2012 with amyloidosis, specifically a rare genetic strain of the disease, alpha fibrinogen amyloidosis caused by the GLU545Val variant. Instead of fishing, he spent the rest of his days fighting to survive, stubbornly insisting on equitable treatment and care for the rare disease that left even doctors stumped. In the years since his death in 2018, his wife and daughters have worked to realize his ultimate legacy: raising money for the Amyloidosis Foundation and promoting awareness of rare genetic diseases. Our family will not only continue to honor our hardworking dad, but will also fight for those who carry the same gene: his daughter, Mandy, and his sister, Margaret.