Lisa's Legacy for ALS

A new 5-year ALS effort

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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

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...

www.prnewswire.com/news-release...

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/

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 ...

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-...

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...

Dear Researchers,
Info re DOD CDMRP ALSRP
ebrap.org/eBRAP/public...

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

www.mlb.com/dbacks/ticke...

ALS MyMatch ALS MyMatch is the newest initiative from the Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital.

Some news that's not bad news :-)
www.massgeneral.org/neurology/al...

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...

www.prnewswire.com/news-release...

Lou Gehrig Day | MLB Together | MLB.com Learn more about how MLB supports the fight against ALS.

@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

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.

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...

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.

Watch this space...
www.als.ceo

What trial is showing a "a 57% increase in her life expectancy?"

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.

Another beautiful person lost to ALS www.nytimes.com/2025/02/24/a...

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...

The secret shopper returned...
als-advocacy.blogspot.com/2025/02/the-...

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

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-...

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 ...

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...

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.

ja.ma/4jCEP4e

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...

people.com/i-was-diagno...

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

Lilly is investing in ALS so maybe.

ElevenLabs - Bridging Voice

Free ElevenLabs Voices Synthesis for every person with ALS
Sign up to get your free voice clone.
bridgingvoice.org/elevenlabs/

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,...

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...

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