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Lisa's Legacy for ALS

@lisalegacy4als.bsky.social
52 followers 81 following 27 posts

Lisa Stockman Mauriello fought for Expanded Access to an ALS treatment. Lisa passed away 8.4.21. Honorinf Lisa’s legacy by advocating for ALS.

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Lisa's Legacy for ALS @lisalegacy4als.bsky.social · 06/05/2026
www.nytimes.com/2026/05/06/w...
nytimes.com
In a Milestone for A.L.S., a Treatment Helps Some Patients Improve
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Lisa's Legacy for ALS @lisalegacy4als.bsky.social · 07/08/2025
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L Brielmaier @lynnbr2.bsky.social · 10/07/2025
A new 5-year ALS effort
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Lisa's Legacy for ALS @lisalegacy4als.bsky.social · 10/06/2025
We hate that this t-shirt has to exist but we love the creativity behind it. Our friend Ed created it as he works to bring about change for all battling ALS. Now please follow the alien's request and complete an ALS Clinic Survey today. bit.ly/448GkkF
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Lisa's Legacy for ALS @lisalegacy4als.bsky.social · 28/05/2025
www.prnewswire.com/news-release...
prnewswire.com
Transposon Announces TPN-101 Selected for Inclusion in the Phase 2/3 HEALEY ALS Platform Trial, Building on the Success of Phase 2 Study in C9orf72-related ALS
/PRNewswire/ -- Transposon Therapeutics, a biotechnology company focused on developing novel, orally administered therapies for the treatment of...
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Lisa's Legacy for ALS @lisalegacy4als.bsky.social · 15/05/2025
The Paula Kovarick Segalman Family Scholarship for ALS for up to $5,000 is now available for individuals who have faced financial hardships due to ALS. The scholarship application is open May 12 through June 16, 2025 at 2 PM Eastern.  everylifefoundation.org/segalman/
everylifefoundation.org
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Lisa's Legacy for ALS @lisalegacy4als.bsky.social · 13/05/2025
Webinar: Genetics of ALS: What to Know and Why it Matters, Regardless of Family History When: Tuesday, May 27th, 5-6 pm ET Who: Led by Ms. Laynie Dratch, a licensed, certified genetic counselor at Penn Medicine Sign up: www.iamals.org/genetics-of-...
iamals.org
Genetics of ALS Webinar: What to Know and Why it Matters, Regardless of Family History - I AM ALS - ALS is Relentless. So Are We!
Curious about how genetics play a role in ALS when there is no family history? Join us on Tuesday, May 27th at 5pm EST for a free one-hour webinar led by Ms ...
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Lisa's Legacy for ALS @lisalegacy4als.bsky.social · 06/05/2025
New Expanded Access Program for ALS. Spinogenix Announces FDA-Authorized Expanded Access Program for SPG302, the First Synaptic Regenerative Therapy to Treat ALS www.prnewswire.com/il/news-rele...
prnewswire.com
Spinogenix Announces FDA-Authorized Expanded Access Program for SPG302, the First Synaptic Regenerative Therapy to Treat ALS
/PRNewswire/ -- Spinogenix, Inc., a clinical-stage biopharmaceutical company pioneering first-in-class therapeutics that restore synapses to improve the lives...
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ALS Advocacy @alsadvocacy.bsky.social · 22/04/2025
Dear Researchers, Info re DOD CDMRP ALSRP ebrap.org/eBRAP/public...
ebrap.org
eBRAP Online Application Submission
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ArrestALSNow @arrestalsnow.bsky.social · 16/04/2025
cnn.com
A professor at Harvard was studying ALS. He lost his funding after the federal freeze | CNN
A laureate professor working on early diagnosis of ALS, or Amyotrophic Lateral Sclerosis, is one of several Harvard University researchers who have received stop-work orders after the Trump administra...
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ALS Advocacy @alsadvocacy.bsky.social · 10/04/2025
www.mlb.com/dbacks/ticke...
mlb.com
Lou Gehrig Night | Arizona Diamondbacks
Join the D-backs in raising awareness and supporting those affected by Amyotrophic Lateral Sclerosis (ALS) on Lou Gehrig Night at Chase Field
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ALS Advocacy @alsadvocacy.bsky.social · 09/04/2025
Some news that's not bad news :-) www.massgeneral.org/neurology/al...
massgeneral.org
ALS MyMatch
ALS MyMatch is the newest initiative from the Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital.
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Lisa's Legacy for ALS @lisalegacy4als.bsky.social · 04/04/2025
www.prnewswire.com/news-release...
prnewswire.com
NeuroSense Therapeutics to Present New Data from PrimeC's Phase 2b Trial in ALS at the Annual American Academy of Neurology Meeting
/PRNewswire/ -- NeuroSense Therapeutics, Ltd. (NASDAQ: NRSN), a leading clinical-stage biotechnology company focused on developing treatments for severe...
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Pete Spencer @sciencepete.bsky.social · 31/03/2025
@mlb.com's Lou Gehrig Day celebrations are coming in June. LGD highlight's Gehrig's amazing career & ALS, the disease that cut it short. It's a great day to get together w/ loved ones at the ballpark. For more info: www.mlb.com/mlb-together.... Local LGD game dates coming soon! @iamals.bsky.social
mlb.com
Lou Gehrig Day | MLB Together | MLB.com
Learn more about how MLB supports the fight against ALS.
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ALS Advocacy @alsadvocacy.bsky.social · 02/04/2025
This is THE big natural history study that we have needed for decades. It's designed & resourced to be bigger and wider than other such studies. People w ALS, people at genetic risk for ALS, and healthy controls are all encouraged to participate. Thanks. www.genengnews.com/topics/trans...
genengnews.com
ALS Consortium Launches Website to Advance ALS Research
The first study participant was enrolled in July 2024, and since that time, the consortium has recruited over 300 participants.
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Pete Spencer @sciencepete.bsky.social · 03/04/2025
When a friend or family member is diagnosed with ALS, family and friends ask, “How can I help?” Here is how! Go to www.all-ALS.org to learn more. You don’t have to have ALS to join the study.
all-als.org
ALL ALS Consortium | ALS Research | ALS Disease Progression
Funded by the NIH, the Access for ALL in ALS Consortium, is a community of 2 coordination centers and 35 research sites across the U.S.
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ALS Advocacy @alsadvocacy.bsky.social · 15/03/2025
Watch this space... www.als.ceo
als.ceo
Home | Analyze Als
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Lisa's Legacy for ALS @lisalegacy4als.bsky.social · 24/02/2025
Another beautiful person lost to ALS www.nytimes.com/2025/02/24/a...
nytimes.com
Roberta Flack, Virtuoso Singer-Pianist Behind ‘Killing Me Softly,’ Dies at 88
With majestic anthems like “Killing Me Softly” and “The First Time Ever I Saw Your Face,” Ms. Flack, a former schoolteacher, became one of the most widely heard artists of the 1970s.
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ALS Advocacy @alsadvocacy.bsky.social · 11/02/2025
The secret shopper returned... als-advocacy.blogspot.com/2025/02/the-...
als-advocacy.blogspot.com
The Secret Shopper Returns
In 2016, the secret shopper project showed some customer service gaps that could be holding back clinical trial enrollment in ALS. Are thing...
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ALS Advocacy @alsadvocacy.bsky.social · 12/02/2025
Please take a moment and contact your US legislators. MDA makes it easy. Resist NIH research cuts. Resist Medicaid cuts. Your voice matters. If nobody pushes back, we'll get what we accept. Thank you. www.votervoice.net/MDA/home
votervoice.net
Action Center
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The ALS Association @alsassociation.bsky.social · 12/02/2025
We are alarmed by proposed funding cuts that would devastate the fight against ALS. Slashing funding for NIH will hinder efforts to turn ALS from fatal to livable and cure it. Congress MUST reject these cuts! We need your voice NOW more than ever. bit.ly/NIH-funding-...
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iamals.bsky.social @iamals.bsky.social · 27/01/2025
The Clinical Trials Team has another installment of their webinar series coming up on February 6th at 7pm ET! Join the team and special guest @lyleostrow.bsky.social as they address how to interpret clinical trial results and communications. www.iamals.org/interpreting...
iamals.org
Interpreting Clinical Trials Webinar - I AM ALS - ALS is Relentless. So Are We!
On Thursday, February 6th at 7pm EST, Dr. Lyle Ostrow, Associate Professor of Neurology at the Lewis Katz School of Medicine at Temple University will join ...
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Lisa's Legacy for ALS @lisalegacy4als.bsky.social · 25/01/2025
ja.ma/4jCEP4e
ja.ma
Reimagining Care and Research for ALS
This Viewpoint advocates for the expansion of clinical research in amyotrophic lateral sclerosis through the development of a well-organized network of centers and community-based clinics.
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Lisa's Legacy for ALS @lisalegacy4als.bsky.social · 23/01/2025
people.com/i-was-diagno...
people.com
My Years of Leg Pain Turned Out to Be ALS: Why the Terminal Diagnosis Isn't Even the Scariest Part (Exclusive)
Over the course of the last three years, Brooke Eby — known as "Limpbroozkit" on social media — has documented the progression of her ALS for an audience of over 300,000 followers between TikTok and I...
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Tavares Speer @tavaresspeer.bsky.social · 18/01/2025
Omw to a funeral and not looking fwd to all the transfers I’ll have to do. Not having a core makes it so difficult. If we had a van transfers to cars would no longer be a problem. Does anyone know a way to get a wheelchair accessible van. It would really make the difference in my well-being. #endals
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L Brielmaier @lynnbr2.bsky.social · 14/01/2025
Free ElevenLabs Voices Synthesis for every person with ALS Sign up to get your free voice clone. bridgingvoice.org/elevenlabs/
bridgingvoice.org
ElevenLabs - Bridging Voice
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ArrestALSNow @arrestalsnow.bsky.social · 09/01/2025
Medicare home health coverage is not limited by law to just a few hours of care per week for just 30-60 days, nor does eligibility turn on the individual’s ability to improve. Yet this is what beneficiaries and their families are told all the time. medicareadvocacy.org/know-jimmo-m...
medicareadvocacy.org
Know Jimmo | Medicare Home Health Coverage Available for People with Ongoing Conditions - Center for Medicare Advocacy
Medicare home health coverage offers the promise of allowing eligible individuals (legally homebound and in need of skilled care), to remain at home with the care they need. According to Medicare law,...
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The LEITH Lab @leithlab.bsky.social · 11/01/2025
Black people w/ ALS face unique challenges navigating a medical system entrenched in anti-Blackness. In Dr. Carter’s (@audretaughtme.bsky.social) comic, we see how these challenges can manifest in the healthcare system. To read Dr. Carter's corresponding paper go to: www.theleithlab.com/gaslighting
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Lisa's Legacy for ALS @lisalegacy4als.bsky.social · 09/01/2025
Fighting ALS is enough of a battle. You shouldn't have to fight for coverage of an FDA approved drug. Check out this ALS TDI article: Chris Spaulding: Fighting for Access to FDA-Approved Treatments for ALS. www.als.net/news/fightin...
als.net
Chris Spaulding: Fighting for Access to FDA-Approved Treatments for ALS
Think about the last time you walked up a staircase. Did you hold the banister? These may seem like arbitrary questions, but for Chris Spaulding, they became central to a legal battle that would consu...
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L Brielmaier @lynnbr2.bsky.social · 07/01/2025
ALS drugs from Denali, Calico come up short, marking setback for Healey trial www.biopharmadive.com/news/denali-... via @BioPharmaDive The platform trial isn't magic, but does whittle the placebo group down to 25%.
biopharmadive.com
ALS drugs from Denali, Calico come up short, marking setback for Healey trial
Denali’s medicine and a similar one from Calico Life Sciences and AbbVie were not much different than a placebo, bringing the tally of failed drugs in the innovative “Healey platform trial” to seven.
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ALS Advocacy @alsadvocacy.bsky.social · 06/01/2025
If you think good public policy matters in the fight vs ALS…. www.morethanourstories.org
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Lisa's Legacy for ALS @lisalegacy4als.bsky.social · 02/01/2025
www.nytimes.com/2025/01/02/w...
nytimes.com
Brooke Eby’s Humor About Living With A.L.S. Made Her a TikTok Star
After being diagnosed with A.L.S. in 2022, Brooke Eby could have turned inward. Instead, she opened up — and found a fan base online.
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Lisa's Legacy for ALS @lisalegacy4als.bsky.social · 27/12/2024
The ALL ALS Clinical Research Consortium study website (all-als.org) is live. It offers valuable info about the groundbreaking Access for All in ALS (ALL ALS) initiative including how to participate. 1/
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L Brielmaier @lynnbr2.bsky.social · 22/12/2024
Call for Proposals: Rare Disease Endpoint Advancement Pilot Program FDA’s Rare Disease Endpoint Advancement (RDEA) Pilot Program is accepting proposals for this quarter until December 31, 2024. www.fda.gov/about-fda/ce... No pressure, Happy Holidays!!
fda.gov
Accelerating Rare disease Cures (ARC) Program
CDER’s ARC Program | Center for Drug Evaluation and Research
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Eric Topol @erictopol.bsky.social · 20/12/2024
What do you get, U.S., for $5 trillion annual healthcare expenditures? Up 7.5% from last year. The worst outcomes for life expectancy, maternal, and infant mortality of all 38 @oecd-ocde.bsky.social member countries
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ALS Advocacy @alsadvocacy.bsky.social · 11/12/2024
Drives me nuts when I see these small percentages of people with ALS participating in trials. There are a couple of major issues -- 1. In US, there are a total of maybe 1500 seats for 30K-ish people. 2. See the poster
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Lisa's Legacy for ALS @lisalegacy4als.bsky.social · 18/12/2024
insitro Receives $25 Million in Milestone Payments from Bristol Myers Squibb for the Achievement of Discovery Milestones and the Selection of First Novel Genetic Target for ALS www.businesswire.com/news/home/20...
businesswire.com
insitro Receives $25 Million in Milestone Payments from Bristol Myers Squibb for the Achievement of Discovery Milestones and the Selection of First Novel Genetic Target for ALS
insitro, a machine learning-enabled drug discovery and development company, today announced it has received $25 million from Bristol Myers Squibb (NYS
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Lisa's Legacy for ALS @lisalegacy4als.bsky.social · 18/12/2024
🥲🥲 www.koreabiomed.com/news/article...
koreabiomed.com
Corestem Chemon's stock plunges after failed P3 ALS drug trial
Corestem Chemon’s stock price hit its daily lower limit as soon as the market opened on Wednesday, following the company's announcement that its phase 3 clinical trial for Neuronata-R, a stem cell the...
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Lisa's Legacy for ALS @lisalegacy4als.bsky.social · 17/12/2024
Good news for veterans fighting #ALS that the Elizabeth Dole Act has been passed by both houses of Congress. veterans.house.gov/uploadedfile...
veterans.house.gov
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L Brielmaier @lynnbr2.bsky.social · 17/12/2024
consistently demonstrated that specific occupations and exposures are linked to onset & progression of ALS. identified body mass index and exposure to persistent organic pollutants, air pollutants & metals as modifiable risk factors associated with ALS. medresearch.umich.edu/labs-departm...
medresearch.umich.edu
The Exposome | ALS Center of Excellence | University of Michigan Medical School
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ProPublica @propublica.org · 15/12/2024
We're investigating health insurance denials. If you want to share your insights, here's how:
propub.li
Do You Have Insights Into Dental and Health Insurance Denials? Help Us Report on the System.
Insurers deny tens of millions of claims every year. ProPublica is investigating why claims are denied, what the consequences are for patients and how the appeal process really works.
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Lisa's Legacy for ALS @lisalegacy4als.bsky.social · 15/12/2024
"These denials are not about medical necessity; they are about cost-saving measures by companies that prioritize profits over patients’ lives." www.statnews.com/2024/12/13/a...
statnews.com
I have a rare form of ALS. I have to fight my insurance company every six months for a game-changing drug
Shelby Kinsey lives with a rare, fast-progressing form of ALS — but she has to spend her precious time fighting for insurance coverage of a drug that helps.
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ALS Advocacy @alsadvocacy.bsky.social · 13/12/2024
Registration is now open for More Than Our Stories 2025 -- The gathering for people who like to get into the weeds of better public policy for ALS. There is nothing else like it. Feb 4-5 in person (seating is limited) in Washington, DC, or online. www.morethanourstories.org
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