Ryan's Story - ALS Association WI Chapter Virtual Symposium 2020

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Hello there, my name is Ryan Slade. I’m here in my lovely home in Horicon, Wisconsin. I’m here to talk a little about my story and how I’m handling the ALS. I’m 44 years old, I have three children - 2 girls and a boy, 13, 10, and 8. I’m very involved with their school, with their activities, their athletics, so they keep me pretty busy. I was diagnosed in December of 2017. Shortly after that I participated in the Brainstorm study of Nurown. Shortly after I was diagnosed I participated in a stem cell therapy administered by Brainstorm called Nurown. It was a 14 month visit at the Mayo Clinic in Rochester, Minnesota. It was a 12 month trial consisting of 14 visits. I went through a series of physical exams, blood tests, 4 FVC pulmonary tests, 7 ECG tests, bone marrow aspiration, and 7 lumbar punctures, and 3 stem cell transplantations. It included a placebo or the Nurown; it was a double-blinded test. That was a 12 month study ending in 2019. Their last participant will end in October 2020 and I should receive the results of if I received a placebo or the Nurown at the end of 2020. Before I was diagnosed, I worked for We Energies for 22 years as a lineman. I worked through almost all the storms, worked through snowstorms and lightning storms. I had the opportunity to travel to Florida to work in a hurricane and also to New York in Superstorm Sandy. The co-workers there have really helped me through my diagnosis; they helped me almost every day giving me calls, still inviting me to parties and stuff like that. Co-workers support has really helped me through the challenging times of the last couple years. I can’t explain enough about my children, how they have helped me through this just by keeping involved with their sports, their school, has really helped me look forward to the next day. Shortly after I was diagnosed, I participated in…I threw out the first pitch at the Chasin’ A Cure event for the Milwaukee Brewers. That really opened some doors of being involved with The ALS Association. They invited me to be a part of the Leadership Team. It is a wide variety of people that attend these meetings, in fact there’s 3 generations of age groups. We brainstorm ideas to earn money for the Association. That has helped me; it’s just another way of looking forward to the future. Being active, being involved - I can’t say enough about how much that has really helped.