FDA 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. www.regulations.gov/docket/FDA-2...

The latest ALS Focus survey on Health & Wellbeing is open until Nov 14. If you’re living with ALS, caring for someone with ALS, or a surviving caregiver, would love for you to share your perspective at alsfocus.org

Survey Challenge Hey ALS/MND peeps! Quick mission for you as I know how much you enjoy clicking buttons. Please take this 2025 Fundamental Rights Survey for people with ALS/MND, caregivers, and blood relatives. Open to all around the world. survey.alchemer-ca.com/s3/50360855/...

More like "conservative guys over 40"

FDA Patient-Focused Drug Development: Workshop COI - Concepts of Interest MAH - Meaningful Aspects of Health COA - Clinical Outcome Assessment Takeaway is FDA very interested in including patient experience data, but is very challenging. These should be part of trial design.

Some days this is hard

"Of all the things at risk, the loss of an objective reality is perhaps the most dangerous. The death of truth is the ultimate victory of evil. When truth leaves us...we become vulnerable to the appetite of whatever monster screams the loudest." - Mon Mothma, Andor S2E9

The real purpose of the scientific method is to make sure nature hasn’t misled you into thinking you know something you actually don’t know. - Robert M. Pirsig

Cassidy was the deciding vote to confirm RFK Jr. based on a promise not to fire the panel. Maybe confirmation promises aren’t enough when there is ZERO accountability!

Swearing in with one hand, pulling the rug with the other.

RIP, friend! You might be the funniest person I ever met. Gonna miss our banter. You endured a lot of hate from some in the ALS community because they disagreed with you. I'm sorry for getting you involved in that, but you handled it like a champ. #ALSobit www.davenportfamily.com/obituaries/a...

Nothing says 'defender of democracy' like wielding the weapon of a Sith Lord. So...no Star Wars nerds on his staff?

May the 4th be with you my fellow #ALSWarriors!

ChatGPT, give us a Muppet Makeover!

While this is definitely a step in the right direction, many #ALS caregivers have to quit working entirely to care for us. Which also does not allow them to put earnings towards Social Security & Medicare for when they will need it.

Survey open! Help us learn more about social connection/quality of life for pALS and current/past caregivers. Your responses will be used to identify common challenges and develop approaches to keep members of the community connected in meaningful and fulfilling ways. www.als.org/research/als...

A ‘conflict of interest-free’ FDA advisory committee policy is a terrible idea www.statnews.com/2025/03/14/f... via @statnews.com

Oh, DOGE! This grant is to study alternative feminine hygiene products using natural fibers instead of synthetic ones. There was one line that used trans and intersex people in their description of the population menstruating. You can read for yourself here: www.usaspending.gov/.../ASST_NON...

My incredible wife, a full-time caregiver and RD recently gave a webinar for www.alsnutrition.org. She shares our story, the realities of caregiving, and practical ways RDs can help. Check it out to learn about our experience and see some interesting photos of me 😏. youtu.be/1msoAEBD18U?...

🤦‍♂️

You can vote for a flat-Earther but you can't vote the Earth flat. #GoScience💪

I'm sure there are some legitimate government costs that need to be reviewed, but cutting NIH funding would greatly impact research for ALS and other diseases. Please consider asking your Congress members to oppose this. www.votervoice.net/MDA/Campaign...

RIP, Mark! He was a fellow #ALS FDA patient rep serving on both AMX Adcoms. Mostly, he was a great dude and I'm glad I got to know. #ALSobit www.legacy.com/us/obituarie...

Would anyone consider cutting off the fuel for a test pilot mid-flight? Of course not. That's exactly what is happening to some people who are our test pilots in clinical trials right now.

Suddenly cutting off USAID left people around the world with experimental drugs and medical products in their bodies, cut off from the researchers who were monitoring them, and generating waves of suspicion and fear. www.nytimes.com/2025/02/06/h...

Guess my morning 💩 about to get 25% more expensive. apnews.com/article/colo...

We are building an #ALS community for persons living with ALS and former/current caregivers in Slack called ALStogether. Slack is an incredible platform to chat and connect. Would love for you to join us. www.alstogether.org

RIP, friend! #ALSobit matthewsfuneralhome.com/michael-darr...

Hard to argue with that! 🤣

Dying to meet you.

Got an email from a hacker claiming they have video of me jerking off to porn and will send it to my contacts unless I pay up. Dude, I have ALS. If I could do that, I’d send the video out myself as a damn miracle! Nice try, though. 🤣

For people with ALS- Dr Nadia Sethi is conducting a short survey on actigraphy/wearables. For your consideration... www.surveymonkey.com/r/F659SN9

#ALSsucks 💔

For Shelby, and the hundreds of other people who depend on #Qalsody, it should never come to this. My fight to get insurance to cover my pricey #ALS drug | STAT www.statnews.com/2024/12/13/a...

Breaking News! The Centers for Medicare and Medicaid Services has announced a historic directive requiring Medicare Advantage plans to approve coverage for Qalsody, a treatment for people living with genetic SOD1-ALS. Learn more about this historic moment: bit.ly/qalsody-access

It would be amazing if everyone connected to ALS reposted this. It says many of the things researchers have said behind the scenes for years, in publication form.

Puts a small grin on my face everyday!

I’ve updated the starter pack for the #ALS #MND community. This includes people with ALS/MND, caregivers, medical professionals, researchers, and advocates. If you’d like to be added, please let me know. go.bsky.app/Ey5a48p

It's National Family Caregivers Month! Thank you to all the caregivers that do so much for us and find a way every day to #RiseUp! youtu.be/lwgr_IMeEgA?...

So, a 25% tariff with Mexico and Canada that would violate the trade deal he negotiated when he was president? abcnews.go.com/Politics/tru...

✅ www.npr.org/2024/11/21/g...

And this... go.bsky.app/Eobkvxp

To new arrivals from the other place... go.bsky.app/Ey5a48p

My Doc: Yes, I would like to prescribe this new ALS medication for a patient. Medicare: Ooh, sorry we cannot do that. Best we could do is offer some lavender soap to place under his bedsheets. www.cnbc.com/2024/11/19/t...

I wrote this article in 2021.👇 Dr. Oz Shouldn't Be a Senator – or a Doctor www.scientificamerican.com/article/dr-o... As we fall further and further into the #DeathCultDarkAge, it is becoming increasingly difficult to be shocked or enraged. But we must continue to be! This. Is. Not. Normal.