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I am the founder of Fight ALD - Fighting Illness Through Education. I started my organization in 2004 after losing my eight year old son, Sawyer, to ALD 6 months after his diagnosis. I have been on a mission to educate medical professionals, school nurses and the community about the early onset symptoms, diagnostic test and treatments as well as lobbying for newborn screening. I continue to support the ALD Connect community through my advocacy work.
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I’m am a 51 year old female with ALD. I have known about ALD for almost my whole life. My brothers were diagnosed with ALD when they were young. My sister and I were diagnosed as “carriers” about 15 years later. I am currently very symptomatic and have been for the past three years although i started to experience minor symptoms when i was about 38. I currently use a wheelchair the majority of the time and have significant spasms in my legs as well as numbness in my feet, legs and fingers. I am hoping for more research studies to be conducted with female subjects. I am also hoping that knowledge will continue to grow within the medical community with regard to women with ALD.
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Our 22 year-old son, Jack, has ALD. He is 13 years post transplant and has some significant challenges, but is happy and doing well. My mother and I also have the gene and have some limited symptoms.
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I have ALD and my son was diagnosed with cerebral ALD. He has a successful bone marrow transplant in 2019.
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I am a female carrier of ALD who unknowingly passed it on to my son. My son is currently asymptomatic and is being monitored by a team of doctors at the University of Minnesota Masonic Children’s Hospital.
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My wife and son have ALD. My son had a successful bone marrow transplant in 2019 at the University of Minnesota. I am a member of a 501(c)(3), X out ALD, that supports ALD research.