Lightnews — Scholar-powered news

@iamals.bsky.social

250 followers 19 following 220 posts

I AM ALS is the largest community movement made up of the very people living with, impacted by, and highly motivated to end ALS. We’re fueled by urgency to find a cure and a track record of real impact.

Posts Media Videos Starter Packs

Pinned

iamals.bsky.social @iamals.bsky.social · 26d

We're launching our Push for Progress campaign to accelerate ALS research, expand treatment access, & secure $1BN in federal funding over 3 years. ALS is at a tipping point CLOSE to new treatments, but thousands will lose access unless we TAKE ACTION @ iamals.org/progress

7 10

iamals.bsky.social @iamals.bsky.social · 22m

Meet the newest member of the ALS Caucus: Rep. Josh Riley! Huge thank you to Scott Daly & Mary Kusior for helping us secure this relationship. YOU can be the one to make a difference in your district; see if your elected officials are on the Caucus (and ask them to join) here: https://bit.ly/3Fw76Ku

iamals.bsky.social @iamals.bsky.social · 5h

Osiel Mendoza is a community member currently living with ALS. Through telling the story of his progression, Osiel is pushing for a future without ALS.

iamals.bsky.social @iamals.bsky.social · 21h

October is National Disability Employment Awareness Month!

After being diagnosed with ALS in 1963 at 21 years old, Stephen Hawking made HUGE contributions to black hole radiation theory and transformed the field of physics.

iamals.bsky.social @iamals.bsky.social · 23h

Several of our most popular ALS resources are now available in Spanish! Check out our resource with everything you need to know about Social Security Disability Insurance (SSDI), now en español: https://bit.ly/4h4jLmi

Informative poster about Spanish resources for Social Security Disability Insurance (SSDI), highlighted during Hispanic Heritage Month, featuring decorative floral borders.

iamals.bsky.social @iamals.bsky.social · 1d

ACT for ALS has made a HUGE impact, bringing us closer than ever to a cure for ALS.

But we need to push for fully funded reauthorization to keep this critical funding—and collaborative work—in place next year. JOIN US TODAY @ bit.ly/fundALS

iamals.bsky.social @iamals.bsky.social · 1d

HAPPY WORLD MENTAL HEALTH DAY!

If you’re impacted by ALS, don’t forget to take care of yourself. Today and always. Find a support group TODAY @ bit.ly/ALSgroups

iamals.bsky.social @iamals.bsky.social · 1d

HAPPY BIRTHDAY to our wonderful friend, co-founder, changemaker, and leader, Brian! We're so grateful for you.

Drop your birthday wishes for Brian in the comments 👇

iamals.bsky.social @iamals.bsky.social · 1d

ALS can be incredibly isolating. Share your hard-earned knowledge with someone who needs it. Get that first-hand knowledge from someone who knows exactly what you're going through. All as part of our Peer Support Initiative! Learn more: https://bit.ly/3FBR1mx

iamals.bsky.social @iamals.bsky.social · 1d

Since we launched our #PushforProgress campaign on September 1, we’ve helped support over 100 people impacted by ALS.

And we couldn’t have done it without you. THANK YOU for all your hard work, community! 💙🧡

iamals.bsky.social @iamals.bsky.social · 3d

Caregivers — we want to hear from you. How do you care for yourself? Tell us at bit.ly/careALS

iamals.bsky.social @iamals.bsky.social · 3d

After Julie’s diagnosis, she poured her time and energy into her friends, family, and loved ones. She used her story to educate others about ALS and made the most of every moment.

iamals.bsky.social @iamals.bsky.social · 4d

In honor of Hispanic Heritage Month (and with the generous assistance of volunteer Carmita Silva), several of our most popular ALS resources are now available in Spanish! Check out "¿Recientemente diagnosticado?" en español: https://bit.ly/4nHRfJJ

Colorful promotional graphic for Hispanic Heritage Month, announcing resources in Spanish for those recently diagnosed with ALS, by the organization I AM ALS.

iamals.bsky.social @iamals.bsky.social · 4d

Social Hour is back, and (of course) this month’s theme is Halloween! Come in costume bearing treats (or tricks) for your fellow attendees. Join us on October 21... if you dare! https://bit.ly/4jbhYuS

Promotional graphic for Social Hour, hosted by I AM ALS, featuring a festive Halloween theme with a smartphone displaying the event webpage. Details include the event time at 6pm ET on October 21, with RSVP link provided.

iamals.bsky.social @iamals.bsky.social · 4d

Juan Reyes is an Air Force Veteran, community member, and advocate fighting for better treatment opportunities and support for people impacted by ALS!

Thank you for all your amazing work, Juan!

iamals.bsky.social @iamals.bsky.social · 5d

November is National Family Caregiver Month, and we're looking forward to sharing incredible stories of resilience and courage from caregivers like you. Share your caregiver story today, and you might see it on our socials next month! https://bit.ly/4kOeH5B

Promotional image for I AM ALS, featuring two individuals at a table, one in a wheelchair, in an engaging conversation under text about celebrating caregiver stories.

iamals.bsky.social @iamals.bsky.social · 5d

What is the ALS Caucus? Why is it important? And how do I get my elected officials to join? Get the answers to all these questions and more at our ALS Caucus 101 webinar on October 15!
🗓️ RSVP today: https://bit.ly/3W33ILB

Promotional image for an "ALS Caucus 101" webinar hosted by the I AM ALS Legislative Affairs Team. Features an illustration of the Capitol Building. Event scheduled for Wednesday, October 15 at 5:30 PM ET. Includes graphic elements in orange and blue with text in white and blue.

Reposted

iamals.bsky.social @iamals.bsky.social · 10d

Music Fights ALS 2025 has officially begun! A $20 donation to I AM ALS = one raffle ticket for an amazing music photography prize of your choice, all throughout October. Check out some of this year's prizes and enter today at musicfightsals.com!

Promotional graphic for Music Fights ALS Year 5, featuring three stylized guitars in blue and orange against a sunset background. Text includes the event name and the website 'www.musicfightsals.com'.

Promotional image featuring musician Prince in 1980, sitting on a sofa. Photo by Deborah Feingold. Text overlay includes 'Win This!' and logos for I AM ALS and Music Fights ALS.

2 3

iamals.bsky.social @iamals.bsky.social · 6d

Gill and his Veteran allies and friends are advocating hard for ALS funding and research. Together, they helped double funding for a DOD-led program from $10 to $20 million!

Join their fight TODAY by pushing for the reauthorization of the ACT for ALS @ bit.ly/fundALS

iamals.bsky.social @iamals.bsky.social · 7d

A WELL-DESERVED congratulations to Eric Dane for being recognized as ALS Advocate of the Year!

Eric has been working hard behind the scenes to push for real progress and a cure for ALS, and we couldn’t be prouder to have his support and partnership in this movement.

Congrats, Eric!

iamals.bsky.social @iamals.bsky.social · 7d

We know firsthand how isolating ALS can be.

But the good news is, you don’t have to go it alone! Head over to bit.ly/IAACalendar to find events, build community, and make lifelong friends!

iamals.bsky.social @iamals.bsky.social · 7d

ACT for ALS, if reauthorized and fully funded, can potentially provide THOUSANDS of people living with ALS with more access to treatments. That’s why we’re partnering with Eric Dane to push for its reauthorization next year.

Join our fight TODAY @ bit.ly/fundALS

1 2

iamals.bsky.social @iamals.bsky.social · 7d

Born & raised in Puerto Rico, Troy Fields is a patient rep, community leader, Bad Bunny fan, & friend helping reform EAPs for people living with ALS.

THANK YOU for everything you do for I AM ALS, Troy, & Happy Hispanic Heritage Month!

Are YOU also a Bad Bunny fan? Comment a 🐰!

iamals.bsky.social @iamals.bsky.social · 8d

If you are or a loved one is living with ALS, just know you are not alone. Julie, Nicky, Perfecto, Walter, Margarita, and thousands of community members are in this with you.

iamals.bsky.social @iamals.bsky.social · 9d

Looking for an easy—and fun—way to #PushforProgress? Host an Empathy Dinner!

VISIT bit.ly/empathydinner for a toolkit TODAY!

iamals.bsky.social @iamals.bsky.social · 9d

When someone you love has ALS, what’s precious to them becomes precious to you. After her dad’s diagnosis, Nicky found comfort in baseball.

If you are or a loved one is living with ALS, do your best to carve out time for things that bring you joy.