Visionary, strategist. Real estate investor, Builder, Libertarian, scholarship foundation CEO. A passion to help others. living with & fighting ALS #EndALS
I wish I could wake up from this nightmare of #ALS & be the person I was meant to be. I miss feeling alive, vibrant, and helping people. I miss being the dad my kids deserve, the husband I once was, the man who I truly am. It has all been ripped away, gone! #findcure#FuckALS
I wish I could wake up from this nightmare of #ALS & be the person I was meant to be. I miss feeling alive, vibrant, and helping people. I miss being the dad my kids deserve, the husband I once was, the man who I truly am. It has all been ripped away, gone! #findcure#FuckALS
FDA approval can take 10+ years — but patients with life-threatening, rapidly-progressing diseases like Alzheimer's and ALS can't wait that long. @braun4indiana and I will introduce a bill to speed up provisional FDA approval of promising drugs for patients with few options left.
Last spring, thousands of you honored yourself and/or your loved ones by placing commemorative flags on the National Mall in Washington, DC. If you would like to have your or your loved one's name on a flag at this year's demonstration, fill out this form. https://t.co/RUH06U6uwL
Today's decision to advance #TOFERSEN was huge for #ALS. It also means denying #NurOwnworks' approval is now inconceivable in a just system. A "failed" Ph3 trial, (more) risk, a totality of evidence, and (essentially) a validated biomarker all became acceptable for #ALS hope- FINALLY!
NYT reports on abductions of Ukrainian kids:
“Soon after seizing the city, Russian forces worked with local collaborators to compile lists of children in hospitals, orphanages and schools. Security footage showed soldiers entering an orphanage…50 children were taken.”
FUCK PUTIN
Today, we are another step closer to ending ALS.
@POTUS's budget request includes $2.5 million to implement #ACTforALS to foster the development of treatments for ALS and other rare neurodegenerative diseases.
When folks meet a person #LIVINGwithALS, what they see is just a fragment of the disease impact. They might notice the wheelchair, or maybe the assistive communication device, or the ventilator. Few dive below the surface to understand the real lost these devices represent.
So, you'll enjoy this: we put what Fox hosts Carlson, Hannity, and Ingraham said, on air, side by side with what they were saying to each other on text, in private, when the cameras stopped rolling.
It's a must-watch and it's pretty shocking: