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Hello from the Pre-fALS Clinic in Miami
Good morning,
I wanted to let you know that ALL of you inspire me! Today, I am in Miami for the first of 2 long days of testing for the pre-fALS study. I think now they would like me to come for 2-3 visits a year. I started volunteering in 2010. I I volunteered for this study because my cousin and father had ALS. Since then, they have both become ALS angels. At times, I wondered if I should keep participating because each visit is scary and not so much fun. Although I have that thought, it is fleeting and I know that what I am doing, along with all the other volunteers, is the only way researchers can find a treatment and cure! Since I started working for ALS News Today and being a part of this forum, my motivation and inspiration has increased. Every time I read a profile, get an email, or read a post/reply, I think, “That is why I volunteer.” Each one of you contribute to my sense of wanting to make a difference. If I was younger and knew what I know now, my career choices would have been much different. I would have definitely gone into medical research with ALS as my target. I’m in my 50s and I love my career as a school psychologist. Although I wish I had not inherited the mutated SOD1 gene from my father, in some odd way I feel blessed that I am in a position to volunteer for ALS research. Please know that all you are the reason I continue to volunteer, and I will always volunteer for any study that may help find a treatment or cure.
I’ll be asking the doctor lots of questions about toferson and the upcoming trials.
If you are involved in one of the studies or trials could you please comment or share? I’d love to know what others in our online community are doing and thinking about all the research!
Amanda
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1 Reply
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Good for you, I was in pre-fALS in Miami but they dropped me when they couldn’t the mutation which affects my family. I’m glad there are some positive developments for SOD1 but hope you won’t need them.
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