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.
Reposted by Lisa's Legacy for ALS
A new 5-year ALS effort
July 10, 2025 at 4:16 PM
A new 5-year ALS effort
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
Now please follow the alien's request and complete an ALS Clinic Survey today. bit.ly/448GkkF
June 10, 2025 at 8:17 PM
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
Now please follow the alien's request and complete an ALS Clinic Survey today. bit.ly/448GkkF
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
May 15, 2025 at 10:21 PM
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/
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-...
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
May 13, 2025 at 7:40 PM
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-...
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...
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
May 6, 2025 at 10:00 PM
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
www.prnewswire.com/il/news-rele...
Reposted by Lisa's Legacy for ALS
Reposted by Lisa's Legacy for ALS
Reposted by Lisa's Legacy for ALS
Reposted by Lisa's Legacy for ALS
Some news that's not bad news :-)
www.massgeneral.org/neurology/al...
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
April 9, 2025 at 1:11 PM
Some news that's not bad news :-)
www.massgeneral.org/neurology/al...
www.massgeneral.org/neurology/al...
Reposted by Lisa's Legacy for 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
Lou Gehrig Day | MLB Together | MLB.com
Learn more about how MLB supports the fight against ALS.
www.mlb.com
March 31, 2025 at 2:57 PM
@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
Reposted by Lisa's Legacy for ALS
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...
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
April 2, 2025 at 6:52 AM
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...
www.genengnews.com/topics/trans...
Reposted by Lisa's Legacy for ALS
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.
Go to www.all-ALS.org to learn more. You don’t have to have ALS to join the study.
April 3, 2025 at 2:22 AM
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.
Go to www.all-ALS.org to learn more. You don’t have to have ALS to join the study.
Reposted by Lisa's Legacy for ALS
Watch this space...
www.als.ceo
www.als.ceo
Home | Analyze Als
www.als.ceo
March 15, 2025 at 1:13 PM
Watch this space...
www.als.ceo
www.als.ceo
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
February 24, 2025 at 4:42 PM
Another beautiful person lost to ALS www.nytimes.com/2025/02/24/a...
Reposted by Lisa's Legacy for ALS
The secret shopper returned...
als-advocacy.blogspot.com/2025/02/the-...
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
February 11, 2025 at 9:14 PM
The secret shopper returned...
als-advocacy.blogspot.com/2025/02/the-...
als-advocacy.blogspot.com/2025/02/the-...
Reposted by Lisa's Legacy for ALS
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
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
February 12, 2025 at 9:20 AM
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
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
Reposted by Lisa's Legacy for ALS
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-...
February 12, 2025 at 5:34 PM
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-...
Reposted by Lisa's Legacy for ALS
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
January 27, 2025 at 2:39 PM
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...
Reposted by Lisa's Legacy for ALS
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
January 18, 2025 at 6:43 PM
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
Reposted by Lisa's Legacy for ALS
Free ElevenLabs Voices Synthesis for every person with ALS
Sign up to get your free voice clone.
bridgingvoice.org/elevenlabs/
Sign up to get your free voice clone.
bridgingvoice.org/elevenlabs/
ElevenLabs - Bridging Voice
bridgingvoice.org
January 14, 2025 at 1:21 AM
Free ElevenLabs Voices Synthesis for every person with ALS
Sign up to get your free voice clone.
bridgingvoice.org/elevenlabs/
Sign up to get your free voice clone.
bridgingvoice.org/elevenlabs/