@GlennonDoyle You senior parents might want to see the LemonTree Prom 2020 that my son and daughter pulled off on what should have been Prom night. I’m proud of them for making Lemonade out of Lemons!
It is with great sadness and a shattered heart, I announce the passing of my husband, best-friend and soulmate of 32 years. He won his final battle with service connected ALS on July 15, 2022. @screw_als I will continue to fight this insidious disease in your memory.
After today’s vote our 6 year old asked me, “If daddy dies will you keep working to get medicines to help people?”
To the 6 who stood on their academic, paternalistic perch and peered down on the lives of those of the terminally ill, and dismissed the data, I hope you see this.
If Cancer was treated like ALS, there would be little to NO treatments today. #NurownNow@US_FDA needs to do the ETHICAL option and provide Accelerated Approval for Nurown, please. @califf001 @FDACBER Peter Marks @iamalsorg
@bsw5020@samstein We were so honored to witness your testimony in those brief moments and are humbled that my spouse gets to have ALS the same time you do. Where would we be, in this fight, without you and Sandra??? Thank You!!!
It's a sad funny ending to find yourself pretending a rich man in a poor man's shirt
Full lyrics 'Better Days' at: https://t.co/Jy2MO7btV7 #betterdays#springsteen
Read the article below. It is now painfully clear that #NurOwn:
Is safe.
Is effective for those with an ALSFS above 26.
Impacts critical biomarkers.
And should be approved today through accelerated approval.
Submit the BLA now.
https://t.co/qCE6Fqa9Ea
@jeff_cranmer@JoeBiden @RepAnnaEshoo @bsw5020 My little boy just wants his dad to live long enough to see him graduate from high school. Thank you for passing this!!!
Thank you to @SherrodBrown @senrobportman and all our other senators for crossing the aisle to pass the #ACTforALS unanimously and to @chuckschumer for rushing it to the President. You have given our little boy the hope that he will have his dad around for many years!
Honored to have President Biden share our family's personal story and the story of this patient led movement.
Honored to walk with the bravest souls on earth in this fight to stay alive.
Let this be the first generation of ALS survivors.
#NeverGiveUp
We don’t want to have people take care of every single hygiene need we have. For years. Pls allow us to get access to hope. @senrobportman please cosponsor S1813, the ACT for ALS. Pls work with @SenSherrodBrown to urge the FDA to approve NurOwn. Day 113 of begging for our lives