Like Lou Gehrig I am the luckiest man alive with great family and friends - enjoy my career - Christ follower - Suffering Cleveland fan and now an ALS Warrior.
@coachbrian6262 Also when visitors come over I try to get into their lives and not focus on my ALS. I also dive deeper into my Christain belief listening to podcasts and reading books and discuss what I am learning with others. Hang in there Brian and hope today is better
@coachbrian6262 Hey Brian - ALS sucks but what has helped me is focusing on others. First on my adult kids and wife future. I made videos for each of them, writing an autobiography that includes lessons from my mistakes and future advice and organizing family movies and photos.
It was such a wonderful day and I’m so grateful that I was able to walk (wheel) my beautiful daughter down the isle with my amazing sons escorting us. Thank you Rea for all the support during my ALS journey. #LoveWins
Congratulations to Tim as he got to walk his beautiful daughter down the aisle!
To learn more about Tim's journey with #ALS and what you can do to help find a cure visit: https://t.co/sdijvcgwS8
#Trekking4Tim
@gregkochak@alsadvocacy@Yuehan218@US_FDA What is really interesting is Corestem is also having a meeting in September. Have not looked at their data on effectiveness. But 2 leading stem cell co for ALS meeting with FDA in Sept. and advocacy groups in continue dialogue with FDA. Hopefully timeline changes.
@adamfwilson426@alsadvocacy He indicated they had enough resources to fund last half of 2019 but will need a capital raise to continue biz beyond. They have a tool to do that but are waiting on the stock price to rise to obtain more funds in secondary market.
@alsadvocacy I love the courage of management team to answers the tough questions the best they could....bad news under current pace will not be available for couple years. Will not do an interim analysis. More discussions with FDA in September and continue discussions with ALSA
@H_Grove@Cooper7r@obj@bakermayfield@God_Son80 - thank you so much for being kind to a fellow ALS Warrior. I am also a huge Browns fan with ALS and your kindness means a lot to me. Hope to see you soon with my boys.
The FDA is under US Dept of Health and Human Services. Maybe @SecAzar could look into why repeated request for ALS guidance documents have been ignored and how disrespected many suffering patients feel in FDA interactions. Let Mr. Azar know details.
@marksberardi Just coming home from Hilton Head. I rented one of these and it was nice to go on the beach I had a couple strong boys with me that could push it and get me out and throw me in the ocean. It was worth the $200 weekly cost.
@marksberardi As an investor and a pALS I hope it’s approved soon. My question if it was approved tomorrow, how long would it take before it would be commercially available and how much funds do they need to raise to bring it to market.
@dbellina3 Quote at end of video from FDA “patients w ALS want access to investigative projects and FDA is here to help...to gain access to unapproved products outside clinical trial the FDA must approve and we do it the majority of the cases”. NurOwn? Why not?