These days I often find myself crying when I think about my daughters. I am sad that I cannot do what other fathers do and I cry happy tears because I am lucky to still be here with them. I carry both emotions in my heart and it shapes who I am.
Good night moon.
"It is much better to look for what I may never find than to find what I do not really want." RIP Norton Juster, from my favorite children's book, Alberic the Wise and Other Journeys.
Shocked by the news. Love her. First time ever I saw your face was the first dance at my wedding. Killing me softly was the first song I played publically with my friend Ted, at my late friend Bert's birthday party in '75.
ALS doesn't kill you softy. We need it gone @bsw5020
A few reminders of why we exist:
1. pALS and cALS carry an enormous burden of managing care outside the clinic, included finding DME, mental health, PT, etc.
2. We bring ALS-trained neurologists to all 50 States
3. We reach patients we are often left out of ALS clinical care...
Cool study from my Alma Mater about the possibility of biomarkers for ALS (MND) being present > 10 years before clinical neurological onset.
https://t.co/ATzqeuMy2B
Rather than wait eight weeks for the hearing transcript, I wanted to share with everyone my testimony from the AMX0035 AdCom today. There is only one right answer to today's AdCom: recommend approval.
Hey rest of the world:
If you care about ending a 160 year old disease that is still 100% fatal and will affect 1 in 300 people alive today, please retweet this tweet or @jonstew1982 tweet.
Sincerely,
A guy with ALS who has a lot left to do in this world
#ItsTime#EndALS
Hear me out:
Girl Scout cookies should only be payable by crypto. Each troop can pick which blockchains they want to support.
I just bought so many boxes 🙈
Excited to see the launch of @synapticure and to glimpse the future of personalized care for ALS patients. Kudos to @bsw5020 and @pwallach87 for making this dream happen. I can vouch for the competent and compassionate care that Anna and the team provide.
Thank you to the incredible @gwenpetersen7 for starring in this video on how Synapticure works featuring an amazing real patient and real care coordinator. This quick video gives you a sense of everything we're focused on today to deliver better care for everyone living with ALS.