ALSvets (@AlSvets) header
ALSvets (@AlSvets) profile picture

ALSvets are a team of US Veterans with ALS and caregivers

Joined October 2020
Photo by ALSvets (@AlSvets)Photo by ALSvets (@AlSvets)Photo by ALSvets (@AlSvets)Photo by ALSvets (@AlSvets)Photo by ALSvets (@AlSvets)Photo by ALSvets (@AlSvets)Photo by ALSvets (@AlSvets)Photo by ALSvets (@AlSvets)Photo by ALSvets (@AlSvets)Photo by ALSvets (@AlSvets)
We are a team of veterans, caregivers, and families who are fighting ALS. We encourage, connect, support, and advocate for veterans with ALS, a 100% service-connected, 100% fatal motor neuron disease. Join us in our fight to #endALS.
5
4
15
Thank you, @RepBrownley's office, for meeting with the @iamalsorg Veterans Team and supporting the healthcare and home care of all Veterans! @votevets
1
6
2
17
1,605
The VA final decision for accessing Relyvrio now better aligns with the FDA's criteria and will afford meaningful access for many. This is an important decision. We will continue to advocate for access so that no barriers remain for Vets living with ALS. bit.ly/3hdoTKd
5
2
16
"If these soldiers were dying in the field ... we would leave no stone unturned. We would use the best existing resources to make sure they had whatever they needed to survive" ~ #GenMik #Thanksgiving #Thanksgiving2022 #VeteransDay #ALS prnewswire.com/news-releases… @johnfeal2
▪️Bellina Brothers = #Navy aviators ▪️Matt got 100% fatal & paralyzing #ALS ▪️Military Medicine: Pilots = 10x risk ▪️Matt regained function on #NurOwn ▪️Ask #FDA for public hearing re #NurOwnWorks @joejonas @glenpowell Please RT finance.yahoo.com/news/am-al… #DevotionMovie #Devotion
.@DevotionMovie is in theaters today! This movie is special and I couldn’t be more grateful for an opportunity to help bring this story to life. ❤️
2
17
4
16
Dear ALS community, We have waited years for NurOwn to come before the FDA for approval. Given the FDA's recent decision on NurOwn, @iamalsorg and other organizations wrote a letter to the FDA requesting an AdComm for NurOwn. Make your voice heard today: iamals.org/action/sign-the-p…
16
93
22
276
Veterans with ALS send open letter to FDA requesting an Advisory Committee meeting to discuss NurOwn iamals.org/updates/veterans-…
1
Widow Truth: Gonna have a win today. I am meeting with the Central TX VA Leadership to have what I am calling an exit interview. Discussing how to find a path foward for equality in care for ALS veterans they serve. @AlSvets #ALSveterans #Tomstroops #ALSwidow
1
6
15
The @iamalsorg Community Outreach Team offers the Tim Lowrey #ALS Panel Series to bring in a virtual panel discussion to groups, classes, association, organizations, or clubs. iamals.org/action/request-a-…
4
11
3
56
Last year, our team and .@iamalsorg’s Community Support team worked together to create a suicide awareness and intervention campaign. This website is one result of our actions: bit.ly/3TpI1lM m.youtube.com/watch?v=FX0FJj…
1
12
59
I AM ALS shares the frustration and disappointment felt by the ALS community today. Read our full statement regarding the FDA's refusal to file. bit.ly/3A8trYv
2
29
2
66
Did you know veterans are more than twice as likely to be diagnosed with #ALS than civilians? RT this to spread awareness bit.ly/3VDG1bn @repSlotkin @chriscoons, @murkowskiS
7
167
6
298
Hell YEAH, it’s a BIG deal!!! So proud to be a part of @iamalsorg #Veterans Affairs Team! @AlSvets , are FIERCE!
Our team collaborated with the Veterans Health Administration #ALS Executive Committee to secure a seat for #veterans living with ALS on this committee. This is the first time veterans have been on this committee and it's a BIG deal. #collaboration #VHA drive.google.com/file/d/1dgA…
1
7
The IAA Veterans Team raises awareness about veteran-specific ALS issues, educates the public, connects veterans with resources to improve their quality of ALS care and accelerate the development of and access to treatments and cures. @ALSvets iamals.org/action/veterans-t…
1
12
1
71
The "why" behind @sandymorris333 and the Morris ALS/MND Principles. #pickupherbaton
3
28
3
183
It's with great sadness and broken hearts that we announce @sandymorris333 our namesake and precious friend is no longer with us. We vow to continue the fight in her honor.
13
30
7
431
ALSvets retweeted
Opinion: Inspired by the Denver Principles, written in 1983 by people living with AIDS, the Morris ALS Principles aim to map out the ALS community's social contract with professionals and organizations focused on the disease. buff.ly/3BmzNoG
4
31
15
63
Dear ALS Key Opinion Leaders, Thank you for asking if people with lived ALS experience are welcomed and involved before saying "yes" to speaking engagements. #endALS
3
6