What have I learned since having ALS? 1) Continuously need to adapt to your new body. 2) Caregivers are incredible. 3) Patience is a virtue. 4) Never trust a fart.
I'm participating in the ALL ALS study as it is critical to understand the full spectrum; slow/fast progressors, genetic, and sporadic.
As Congress considers reauthorization of the ACT for ALS, let's ensure natural history studies have a clear path to continued funding.
#ALS
Congress is currently debating the Act for ALS Reauthorization. As it is heard in the Senate's HELP committee this coming week we need to make sure committee staff understand the importance of natural history studies like ALL ALS and Prevent ALS to our communities. 1/3
For decades we have needed a honking big ALS natural history study with broad & deep data. Finally we got one to do just that. Now we're not very good at getting the word out. Pls, if you can only participate in one observational study, please make it... https://t.co/6edG2HKGvv
Appreciate Tarra Jones for continuing to follow this story and helping share this year’s advocacy success.
#ALSAwarenessMonth@chad4ok@KSWO_7NEWS
“Good news” for Oklahomans living with ALS after new state support https://t.co/5oPi6Ceo1w
A few years ago, getting #ALS recognized at the Oklahoma Capitol felt like a long shot…but we’re too stubborn!
Today: #ALSAwarenessMonth is officially recognized by @GovStitt and we just approved $1M for ALS services statewide. True team effort!
@chad4ok
This was a great example of teamwork and not giving up after 3+ years of effort. Huge thanks to Rep @chad4ok for all your work on helping make this happen!
We are proud to share a major victory in Oklahoma, $1 million secured in Oklahoma! This is all thanks to your voice, your persistence, and your commitment to the ALS community! These funds mean expanded access to essential services, increased support for families navigating an ALS diagnosis, and stronger infrastructure to meet the urgent needs of the ALS community in Oklahoma.
Lawmakers took meaningful action to support people living with ALS and their families. They championed H.B. 4029—legislation that delivers critical funding to strengthen care and support services across the state.
This new law directs the transfer of $1,000,000 from the Oklahoma State Department of Health to the Barbara Weber Amyotrophic Lateral Sclerosis (ALS) Grant Program Revolving Fund.
This investment is more than a number—it’s a lifeline.
Learn how you can be an advocate in your state: https://t.co/dZrP0TvtzP
Honored that May 2026 has been officially recognized as ALS Awareness Month in Oklahoma. Grateful for the growing support for ALS families across our state.
ALS Focus Survey: Assistive Technology for Everyday Activities
Survey open until May 22! Share your everyday interactions with assistive tech. Whether you use high-tech devices, a few simple tools, or no technology at all — your perspective matters!
https://t.co/qNSmDhmd9N
If you can only participate in one study, please make it this one. It's the natural history study that we have needed. It's designed and funded to supply a lot of data from a lot of people. Remote participation possible. Healthy vols needed too.
We got to catch up with Tarra Jones with @KSWO_7NEWS and chat about the passing of Eric Dane and our Oklahoma ALS advocacy efforts.
https://t.co/MB3tJEgmwr
Not bad for our first Oklahoma ALS advocacy day! So proud and thankful for the over 50 people that came out to help raise awareness and share our stories.
1000 volunteers w ALS are a lot, but not enough to unravel the mysteries of a heterogeneous disease like ALS. If you have ALS, please join ALL ALS (it can be done remotely). Thank you.
https://t.co/6edG2HKGvv
Wendy is a caregiver for her husband who is currently living with ALS. Wendy shares her teen daughter’s viewpoint of what it is like to have a parent living with ALS.
Yes, they flipped the food pyramid just like the South Park episode. Somewhere Cartman is screaming ‘I told you so’ through a mouthful of bacon.
https://t.co/fJmg1Rc2sB
@FDACBER provided interim response on Dec 11 to #Nurown Citizens' Petition. It states they need more time, so not looking like they will make this month's deadline.
https://t.co/VTDVIsRmsP