Lisa's Legacy for ALS
@lisalegacy4als.bsky.social
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.
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
www.prnewswire.com/news-release...
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...
prnewswire.com
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
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-...
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 ...
iamals.org
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...
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...
prnewswire.com
Dear Researchers, Info re DOD CDMRP ALSRP ebrap.org/eBRAP/public...
eBRAP Online Application Submission
ebrap.org
www.prnewswire.com/news-release...
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...
prnewswire.com
@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
Lou Gehrig Day | MLB Together | MLB.com
Learn more about how MLB supports the fight against ALS.
mlb.com
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...
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.
genengnews.com
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 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.
all-als.org
ALS Advocacy@alsadvocacy.bsky.social · 2y agoThis is from 2022... vimeo.com/726779719/57... And now we have the natural history study ALL ALS! Please participate.
Another beautiful person lost to ALS www.nytimes.com/2025/02/24/a...
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.
nytimes.com
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
Action Center
votervoice.net
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-...
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...
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 ...
iamals.org
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
Free ElevenLabs Voices Synthesis for every person with ALS Sign up to get your free voice clone. bridgingvoice.org/elevenlabs/
ElevenLabs - Bridging Voice
bridgingvoice.org
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...
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,...
medicareadvocacy.org
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
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...
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...
als.net
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%.
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.
biopharmadive.com