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Lisa's Legacy for ALS @lisalegacy4als.bsky.social · Aug 7

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Reposted by Lisa's Legacy for ALS

L Brielmaier @lynnbr2.bsky.social · Jul 10

A new 5-year ALS effort

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Lisa's Legacy for ALS @lisalegacy4als.bsky.social · Jun 12

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Lisa's Legacy for ALS @lisalegacy4als.bsky.social · Jun 10

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 · May 28

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...

www.prnewswire.com

Lisa's Legacy for ALS @lisalegacy4als.bsky.social · May 15

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

Lisa's Legacy for ALS @lisalegacy4als.bsky.social · May 13

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 ...

www.iamals.org

Lisa's Legacy for ALS @lisalegacy4als.bsky.social · May 6

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...

www.prnewswire.com

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ALS Advocacy @alsadvocacy.bsky.social · Apr 21

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

eBRAP Online Application Submission

ebrap.org

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Reposted by Lisa's Legacy for ALS

ArrestALSNow @arrestalsnow.bsky.social · Apr 16

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...

www.cnn.com

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Reposted by Lisa's Legacy for ALS

ALS Advocacy @alsadvocacy.bsky.social · Apr 10

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

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

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Reposted by Lisa's Legacy for ALS

ALS Advocacy @alsadvocacy.bsky.social · Apr 9

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

ALS MyMatch

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

www.massgeneral.org

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Lisa's Legacy for ALS @lisalegacy4als.bsky.social · Apr 4

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...

www.prnewswire.com

Reposted by Lisa's Legacy for ALS

Pete Spencer @sciencepete.bsky.social · Mar 31

@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.

www.mlb.com

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Reposted by Lisa's Legacy for ALS

ALS Advocacy @alsadvocacy.bsky.social · Apr 2

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.

www.genengnews.com

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Reposted by Lisa's Legacy for ALS

Pete Spencer @sciencepete.bsky.social · Apr 3

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.

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Reposted by Lisa's Legacy for ALS

ALS Advocacy @alsadvocacy.bsky.social · Mar 15

Watch this space...
www.als.ceo

Home | Analyze Als

www.als.ceo

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Lisa's Legacy for ALS @lisalegacy4als.bsky.social · Mar 5

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

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Lisa's Legacy for ALS @lisalegacy4als.bsky.social · Feb 24

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.

www.nytimes.com

Reposted by Lisa's Legacy for ALS

ALS Advocacy @alsadvocacy.bsky.social · Feb 11

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

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...

als-advocacy.blogspot.com

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Reposted by Lisa's Legacy for ALS

ALS Advocacy @alsadvocacy.bsky.social · Feb 12

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

www.votervoice.net

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Reposted by Lisa's Legacy for ALS

The ALS Association @alsassociation.bsky.social · Feb 12

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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Reposted by Lisa's Legacy for ALS

iamals.bsky.social @iamals.bsky.social · Jan 27

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 ...

www.iamals.org

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Lisa's Legacy for ALS @lisalegacy4als.bsky.social · Jan 25

ja.ma/4jCEP4e

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

Lisa's Legacy for ALS @lisalegacy4als.bsky.social · Jan 23

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

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

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