ALS Advocacy
@alsadvocacy.bsky.social
ALS = Lou Gehrig's Disease Thought it had been cured by now?
Still no known cause. Still no cure. Still meh treatments. Still quickly fatal. Still outrageous.
https://x.com/alsadvocacy
Still no known cause. Still no cure. Still meh treatments. Still quickly fatal. Still outrageous.
https://x.com/alsadvocacy
Reposted by ALS Advocacy
Regulators have linked Mark McAfee’s raw dairy farm to more than a dozen recalls and outbreaks that left hundreds of people ill.
“I’ve put a couple kids in the hospital,” McAfee said. “But here’s the thing: I’m a pioneer.”
(Published June)
“I’ve put a couple kids in the hospital,” McAfee said. “But here’s the thing: I’m a pioneer.”
(Published June)
He Profits Off Raw Milk That’s Making People Sick. The Government Isn’t Stopping Him.
With Raw Farm, the largest raw-milk dairy in the country, Mark McAfee has capitalized on a once-fringe product that’s been thrust into the mainstream in recent years and backed by Health Secretary Rob...
www.propublica.org
October 8, 2026 at 3:15 AM
Regulators have linked Mark McAfee’s raw dairy farm to more than a dozen recalls and outbreaks that left hundreds of people ill.
“I’ve put a couple kids in the hospital,” McAfee said. “But here’s the thing: I’m a pioneer.”
(Published June)
“I’ve put a couple kids in the hospital,” McAfee said. “But here’s the thing: I’m a pioneer.”
(Published June)
Sunday.
Be there or be square.
Be there or be square.
October 6, 2026 at 6:17 PM
Sunday.
Be there or be square.
Be there or be square.
ALS advocacy is not fun advocacy. The loss of the people you work with and friends you make is relentless. It's the reality of ALS. It is heartbreaking work, but that is why it is so necessary.
October 6, 2026 at 1:21 PM
ALS advocacy is not fun advocacy. The loss of the people you work with and friends you make is relentless. It's the reality of ALS. It is heartbreaking work, but that is why it is so necessary.
Sometimes I read a message and have to read it two more times since I don't want to really see what it says. ALS is a stinking disease.
October 6, 2026 at 1:13 PM
Sometimes I read a message and have to read it two more times since I don't want to really see what it says. ALS is a stinking disease.
Reposted by ALS Advocacy
Their studies support further investigation of TBK1 augmentation as a therapeutic strategy for preventing disease caused by UBQLN2 mutations.
TBK1 overexpression reduces neuronal loss in the P497S UBQLN2 mouse model of ALS/FTD.
www.sciencedirect.com/science/arti...
TBK1 overexpression reduces neuronal loss in the P497S UBQLN2 mouse model of ALS/FTD.
www.sciencedirect.com/science/arti...
www.sciencedirect.com
October 4, 2026 at 3:08 PM
Their studies support further investigation of TBK1 augmentation as a therapeutic strategy for preventing disease caused by UBQLN2 mutations.
TBK1 overexpression reduces neuronal loss in the P497S UBQLN2 mouse model of ALS/FTD.
www.sciencedirect.com/science/arti...
TBK1 overexpression reduces neuronal loss in the P497S UBQLN2 mouse model of ALS/FTD.
www.sciencedirect.com/science/arti...
Reposted by ALS Advocacy
Oct. 19 Technical Assistance Webinar- RFA-NS-26-001: Amyotrophic Lateral Sclerosis (ALS) Intermediate Patient Population Expanded Access (U01 Clinical Trial Required)
www.grants.gov/search-resul...
Proposals due November 10th.
www.grants.gov/search-resul...
Proposals due November 10th.
Lock
www.grants.gov
October 5, 2026 at 1:24 AM
Oct. 19 Technical Assistance Webinar- RFA-NS-26-001: Amyotrophic Lateral Sclerosis (ALS) Intermediate Patient Population Expanded Access (U01 Clinical Trial Required)
www.grants.gov/search-resul...
Proposals due November 10th.
www.grants.gov/search-resul...
Proposals due November 10th.
Reposted by ALS Advocacy
When an insurance company is deciding whether to pay for your medical treatment, it generates a file, which should contain all records associated with your case, including documents explaining why the claim was denied.
You have a right to see this file.
(Published May 2023)
You have a right to see this file.
(Published May 2023)
Health Insurance Claim Denied? See What Insurers Said Behind the Scenes
Learn how to request your health insurance claim file, which can include details about what your insurer is saying about you and your case.
www.propublica.org
October 2, 2026 at 2:58 AM
When an insurance company is deciding whether to pay for your medical treatment, it generates a file, which should contain all records associated with your case, including documents explaining why the claim was denied.
You have a right to see this file.
(Published May 2023)
You have a right to see this file.
(Published May 2023)
A good investment of 45 minutes if you are interested in ALS clinical trials... youtu.be/4cihrPQzLTM?...
Understanding Clinical Trials: A Guide for the ALS Community
YouTube video by Target ALS
youtu.be
September 29, 2026 at 11:36 AM
A good investment of 45 minutes if you are interested in ALS clinical trials... youtu.be/4cihrPQzLTM?...
www.genomeweb.com
September 29, 2026 at 9:19 AM
Reposted by ALS Advocacy
Despite being a famous Hollywood star if you want to know what sort of person DAVID NIVEN was, the largest wreath at his funeral was from the Porters at Heathrow Airport.
It read:
“To the finest gentleman who ever walked through these halls. He made a Porter feel like a King.”
It read:
“To the finest gentleman who ever walked through these halls. He made a Porter feel like a King.”
September 27, 2026 at 5:56 PM
Despite being a famous Hollywood star if you want to know what sort of person DAVID NIVEN was, the largest wreath at his funeral was from the Porters at Heathrow Airport.
It read:
“To the finest gentleman who ever walked through these halls. He made a Porter feel like a King.”
It read:
“To the finest gentleman who ever walked through these halls. He made a Porter feel like a King.”
I need a price index based on my shopping basket. Holy cow... produce has gone up a lot in the last two weeks. And how did a formerly $1 box of whole wheat pasta move up to $1.87? Eating healthy is extraordinarily expensive right now. Eating unhealthy is expensive in other ways.
September 27, 2026 at 1:54 PM
I need a price index based on my shopping basket. Holy cow... produce has gone up a lot in the last two weeks. And how did a formerly $1 box of whole wheat pasta move up to $1.87? Eating healthy is extraordinarily expensive right now. Eating unhealthy is expensive in other ways.
It is quite refreshing when a humble and good man brings joy to so many. There is hope for humanity!
September 26, 2026 at 6:07 PM
It is quite refreshing when a humble and good man brings joy to so many. There is hope for humanity!
ND Neuroscience Club annual ALS walk Oct 11. The walk stops at the Grotto where students read the names of alumni/friends/relatives/subway alumni w ALS. If you would like your name or that of a loved one added to the list, please submit here. Thank you. survey.alchemer.com/s3/9012288/R...
Notre Dame Alumni, Family Members, Friends with ALS
survey.alchemer.com
September 25, 2026 at 2:40 PM
ND Neuroscience Club annual ALS walk Oct 11. The walk stops at the Grotto where students read the names of alumni/friends/relatives/subway alumni w ALS. If you would like your name or that of a loved one added to the list, please submit here. Thank you. survey.alchemer.com/s3/9012288/R...