ALS hurts – it hurts families, it hurts communities, and it hurts my heart. Our ALS community has lost some great ones recently that I’d like for you to meet.
Click this link to meet Nicole and Mike.
Mike was on stage with President Trump when the Right to Try Bill was signed in 2018. Mike was a leader, he was tenacious in this pursuit of changing the landscape of ALS. Mike and Nicole were who I reached to when I visited DC recently. Mike is gone but not forgotten.
Click this link to meet Steph. This was a recent post on FB from Steph that shows why I loved his approach to this disease”
“English can be so confusing and contradictory especially when you consider all the ways we have used one word as a noun, verb, adverb, adjective… You all know I’m talking about the mother of all words FUCK; you get, can be, just wanna, just dont give a, you can give a, and its beautiful as, happy as, sad as, off.. The list is seemingly Fucking endless. I imagine that by now your laughing your fucking ass off…. Just a random fucking thought, thats fuck all I’ll say about it .. ALS #AlwaysLaughingStill“
Steph lived live to the fullest. He remains an inspiration to all of us fighting this disease. I hope these few pieces give you a glimpse of how wonderful this fighter was for community.
Click this link to meet Cory.
This is from his obit that is just amazing:
“At a young age, the terminal disease ALS rocked Cory’s world. His father was diagnosed and died when Cory was 13. Not a stranger to the impacts of ALS, Cory did not let this stop him – he found passion and drive in advocacy, research and fundraising for a cure upon his diagnosis. Known to many as a “clinical trial guru”, Cory spent countless hours researching and engaging with others. In addition, he actively participated in a clinical trial at Duke and John Hopkins in Baltimore, Maryland. Cory actively engaged and collaborated with organizations such as ALS-TDI and I AM ALS. Cory received the Stephen Heywood Patients Today Award in November 2018 given by ALS-TDI. This award is presented to a member of the ALS community who has proven to be a strong advocate for research and awareness. This person challenges their community to collectively fight the disease while serving as an educator for those unfamiliar with ALS.”
Thank you for taking a moment to meet these fathers, husbands, and friends. Words are inadequate when describing the impact these men had on those around them. Please continue to love and support the families during this difficult time. We have got to #endals
Brian Wallach said it best:
“They leave behind amazing families, friends, and communities. Lives that they poured themselves into. A fight against a relentless killer that they led while they could.”