lynda brininger Sandy Morris It sure is the world leaders should be getting together to try to get the best treatment for everyone who is fighting MND

Tonight I had help for Brian, childcare for our girls... and I left the house. I hung out with my mom, dad and sister for hours, had wine and laughs. And man, did it feel great. If you're a caregiver and there is any way to make this happen, I recommend it. Take care of you.

GayValimont #GetGaetzGone WINK News Sydney Persing U.S. FDA Brian Valimont I AM ALS Thank you for sharing your story with the world. Hopefully this will motivate those stagnant to make the necessary changes in drugs and treatment options. Sending so much love.

GayValimont #GetGaetzGone Graubart - graubart.bsky.social WINK News Sydney Persing U.S. FDA Brian Valimont I AM ALS Hoping this powerful news story brings more attention to the crucial need for people to be able to get the medicines that could help them. 🙏🏼 So sorry for all the pain you all are going through. And thank you for continuing to advocate for others. 🤗

I appreciate the brave vulnerability of this tweet. This is our world. These are our choices. I look forward to the day that our future is 'which investigational therapy do I choose' rather than our current options of traches, hospice or assisted suicides. We can do better.

15-year-old Sophia was last seen on August 18, 2021 in Cheektowaga, #NewYork. She may travel out of state. missingkids.org/poster/NCMC/14…

Louisiana area ALS people/families, please let us know your status after the impact of Hurricane Ida. We realize power & cell service are off or limited and we are assessing how we can provide assistance or guidance. If you have an emergency, please message us here.

For the last year, as we progressed and too many died, we worked hand in hand with FDA, NIH, Congress and advocacy groups to craft this bill and answer every question. It’s time to move this bill to votes. It’s time to give dying patients a chance to live. #ItsTime /end

Katrina joined the Many Shades of ALS team after losing her partner of 23 years to #ALS. She is a fierce advocate for ALS awareness, and engages others to join this Revolution! You can support her fundraiser here: bit.ly/3yiIQSn #ManyShadesOfALS #JoinTheTeam #IAMALS

From our friends at Your ALS Guide: Alternative forms of communication can help you continue to communicate and stay engaged with others. Learn about voice banking, message banking, low-tech solutions, and speech-generating devices here: bit.ly/3zbdy19 #ALSResource

Last year I submitted my story to PBS American Portrait on what gets me out of bed. Today, I ask Senate Democrats Senate Republicans to support #S1813 so we can continue to get out of bed. And maybe w/out a hoyer lift. youtu.be/PtxSzjXFo0A #ACTforALS

REMEMBERING #NeonPark, the American artist and illustrator who lost his life to motor neuron disease #MND (known as #ALS in the #USA) #otd 1993 at the age of 52. Famous for his pop art-inspired album covers, he created some of the most provocative and memorable in #rock history!

Tell pharmaceutical companies that open-label extensions shouldn't be just an occasional perk of certain clinical trials -- they are vital for people living with ALS and should be standard practice for all ALS clinical trials. Sign the petition: bit.ly/3kNE76F

Tonight my daughters put on a rock concert just for me. Then they read three books just to me. You ask why I’m grateful for every day even though I am fighting ALS. See above.

Did you know most ALS drugs are developed by small companies that can’t afford expanding access beyond a clinical trial. So patients suffer. #ACTforALS changes that. Join us in making it real. Drop a reply below when you do so we can say thank you. iamals.org/legislation/ac…

I now look at my body through a completely different lens. “Does this make me look fat?” has become “Can I button that on my own?” I’ve reflected a lot on body image and how time is wasted on judging our bodies vs. thanking them. #ALS

This Saturday I turn 41. Honestly, I didn’t think I would be alive now when I was diagnosed with ALS in 2017. I have 1 birthday wish: to bring 4,100 new donors into the ALS fight to help end it. So, who is up for doing something amazing with me? iamals.org/happy-birthday…

Going to pin this to my twitter feed so I can see Eric everyday💔❤️💔❤️💔 x.com/Jaynes__World/…