@iamals.bsky.social
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.
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iamals.bsky.social
@iamals.bsky.social
· Sep 15
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
Check out I AM ALS Peer Mentor Juan Reyes' "The ALS Express: Expressive Reflections on Living With ALS" for a raw, unfiltered glimpse into the reality of living with ALS! Grab YOUR copy → bit.ly/ALSExpress
February 9, 2026 at 5:09 PM
Check out I AM ALS Peer Mentor Juan Reyes' "The ALS Express: Expressive Reflections on Living With ALS" for a raw, unfiltered glimpse into the reality of living with ALS! Grab YOUR copy → bit.ly/ALSExpress
Tim Lowrey began this panel series to educate more people about ALS through their schools or places of work. We miss him very dearly, and we're upholding his legacy by continuing to offer his virtual panel discussions. Request a panel @ bit.ly/ALSPanel
February 9, 2026 at 4:12 PM
Tim Lowrey began this panel series to educate more people about ALS through their schools or places of work. We miss him very dearly, and we're upholding his legacy by continuing to offer his virtual panel discussions. Request a panel @ bit.ly/ALSPanel
The ALS Caucus has made many of our wins possible—ACT for ALS, historic ALS funding, and promising therapies. But we'll lose 13% of the caucus this year without action. Ask your legislator to join TODAY → bit.ly/ALSviewer
February 9, 2026 at 4:12 PM
The ALS Caucus has made many of our wins possible—ACT for ALS, historic ALS funding, and promising therapies. But we'll lose 13% of the caucus this year without action. Ask your legislator to join TODAY → bit.ly/ALSviewer
Margit found strength in her Crossfit community—but not how you'd think. She asked for help, and they responded with an outpouring of love and support. Full story @ bit.ly/AFHMargit
February 8, 2026 at 4:53 PM
Margit found strength in her Crossfit community—but not how you'd think. She asked for help, and they responded with an outpouring of love and support. Full story @ bit.ly/AFHMargit
Finding specialized ALS care is one of the hardest parts of navigating this disease. That's why we put this resource together for you! Check it out at bit.ly/myALSclinic
February 8, 2026 at 4:05 PM
Finding specialized ALS care is one of the hardest parts of navigating this disease. That's why we put this resource together for you! Check it out at bit.ly/myALSclinic
Community keeps us ALL going. If you're impacted by ALS, get 1:1 virtual ALS support from our trained Peer Mentors. They see you. They get it. And they're here to help :) SIGN UP TODAY at bit.ly/ALSpeers
February 8, 2026 at 2:52 PM
Community keeps us ALL going. If you're impacted by ALS, get 1:1 virtual ALS support from our trained Peer Mentors. They see you. They get it. And they're here to help :) SIGN UP TODAY at bit.ly/ALSpeers
Thank you to all who joined our ACT for ALS Webinar last month! In case you missed it, you can catch the full video on YouTube at bit.ly/A4AWebinar
February 7, 2026 at 9:11 PM
Thank you to all who joined our ACT for ALS Webinar last month! In case you missed it, you can catch the full video on YouTube at bit.ly/A4AWebinar
Announcing the I AM ALS Storytelling Crew! If you're impacted by ALS, join us for a six-week workshop to build confidence and connection through storytelling. JOIN TODAY @ bit.ly/StorytellingCrew
February 7, 2026 at 8:12 PM
Announcing the I AM ALS Storytelling Crew! If you're impacted by ALS, join us for a six-week workshop to build confidence and connection through storytelling. JOIN TODAY @ bit.ly/StorytellingCrew
Kendra Womack's dedicated efforts as co-chair of Many Shades of ALS have helped make the ALS community more responsive to people of color living with ALS. Drop a "Thank you, Kendra! 🧡" in the comments below!
February 7, 2026 at 3:05 PM
Kendra Womack's dedicated efforts as co-chair of Many Shades of ALS have helped make the ALS community more responsive to people of color living with ALS. Drop a "Thank you, Kendra! 🧡" in the comments below!
Follow the Cures Collective TODAY for opportunities to advocate for ALL neurodegenerative diseases: IG: @curescollective | LinkedIn: Cures Collective | Updates: bit.ly/CuresUpdates
February 6, 2026 at 3:12 PM
Follow the Cures Collective TODAY for opportunities to advocate for ALL neurodegenerative diseases: IG: @curescollective | LinkedIn: Cures Collective | Updates: bit.ly/CuresUpdates
Find your tribe and join a Community Team TODAY @ bit.ly/vol4ALS
February 6, 2026 at 2:13 PM
Find your tribe and join a Community Team TODAY @ bit.ly/vol4ALS
We secured $313 million in federal funding for ALS in the FY2026 budget. That means more funding than ever for ALS programs through agencies and programs such as the DoD, NIH, ARPA-H and CDMRP—all thanks to YOUR advocacy!
February 6, 2026 at 1:53 PM
We secured $313 million in federal funding for ALS in the FY2026 budget. That means more funding than ever for ALS programs through agencies and programs such as the DoD, NIH, ARPA-H and CDMRP—all thanks to YOUR advocacy!
The Many Shades of ALS team's POWERFUL work has made strides within the ALS community—elevating the lived experiences of people of color living with ALS, connecting people with resources they need, and growing the movement along the way. Learn more @ tinyurl.com/MSOATeam
February 5, 2026 at 3:13 PM
The Many Shades of ALS team's POWERFUL work has made strides within the ALS community—elevating the lived experiences of people of color living with ALS, connecting people with resources they need, and growing the movement along the way. Learn more @ tinyurl.com/MSOATeam
SO, what's next? BIG THINGS. But you'll only be the first to know if you sign up for our email list → bit.ly/News4ALS
February 5, 2026 at 2:10 PM
SO, what's next? BIG THINGS. But you'll only be the first to know if you sign up for our email list → bit.ly/News4ALS
Community, last year alone, our volunteers hosted 70 Tim Lowrey Panels—which bring virtual panel discussions from people living with & impacted by ALS to groups, orgs, and schools! Thank you to everyone who attended! Check out the full video → bit.ly/TimLowrey
February 4, 2026 at 4:12 PM
Community, last year alone, our volunteers hosted 70 Tim Lowrey Panels—which bring virtual panel discussions from people living with & impacted by ALS to groups, orgs, and schools! Thank you to everyone who attended! Check out the full video → bit.ly/TimLowrey
Let's CELEBRATE! The new budget passed yesterday with an additional $45 million for ALS! Thanks to YOUR hard work, ALS has more funding than ever before, and we're on the cusp of so much research progress. KEEP IT UP, ALS community!
February 4, 2026 at 2:49 PM
Let's CELEBRATE! The new budget passed yesterday with an additional $45 million for ALS! Thanks to YOUR hard work, ALS has more funding than ever before, and we're on the cusp of so much research progress. KEEP IT UP, ALS community!
Thank you, Dr. Bedlack and I AM ALS advocate and volunteer Marvin Shaw, for walking us through the latest on promising ALS therapies! Tofersen is working well, but only for a small number of ALS patients. So we're pushing for progress to spread the hope. Full article @ bit.ly/ALShope
February 3, 2026 at 5:14 PM
Thank you, Dr. Bedlack and I AM ALS advocate and volunteer Marvin Shaw, for walking us through the latest on promising ALS therapies! Tofersen is working well, but only for a small number of ALS patients. So we're pushing for progress to spread the hope. Full article @ bit.ly/ALShope
An estimated 6.5% of ALS patients in the U.S. are Black. However, that statistic, and many others, are impacted by underdiagnosis and underrepresentation of Black people living with ALS. If you're impacted, SIGN UP for a Natural History Study TODAY → bit.ly/ALSStudies
February 3, 2026 at 3:54 PM
An estimated 6.5% of ALS patients in the U.S. are Black. However, that statistic, and many others, are impacted by underdiagnosis and underrepresentation of Black people living with ALS. If you're impacted, SIGN UP for a Natural History Study TODAY → bit.ly/ALSStudies
The CONNECT Act would increase access to care for countless people currently living with ALS. Ask your Senators to sign or cosponsor it TODAY → bit.ly/ALSConnect
February 3, 2026 at 2:45 PM
The CONNECT Act would increase access to care for countless people currently living with ALS. Ask your Senators to sign or cosponsor it TODAY → bit.ly/ALSConnect
Great news! The Senate just passed a bill that increases funding for ALS research! We’re not done yet. The House needs to pass this bill. Let’s show them how important ALS research is. Send them a message and share this action @ bit.ly/fundALS26
February 2, 2026 at 5:53 PM
Great news! The Senate just passed a bill that increases funding for ALS research! We’re not done yet. The House needs to pass this bill. Let’s show them how important ALS research is. Send them a message and share this action @ bit.ly/fundALS26
Kelly is a dedicated community member, wife, and mother who carries on her husband's legacy by pouring into the ALS community. Thank you for everything you do, Kelly!
February 2, 2026 at 4:10 PM
Kelly is a dedicated community member, wife, and mother who carries on her husband's legacy by pouring into the ALS community. Thank you for everything you do, Kelly!
Happy Black History Month! We'll be celebrating the resilience, history, and unique life experiences of the Black ALS community. Watch this space for stories and advocacy opportunities!
February 2, 2026 at 3:09 PM
Happy Black History Month! We'll be celebrating the resilience, history, and unique life experiences of the Black ALS community. Watch this space for stories and advocacy opportunities!
February is National Self-Check Month, and early detection makes a HUGE difference. If something feels off health-wise, consider this the sign you've been waiting for. Seek medical help TODAY!
February 1, 2026 at 3:53 PM
February is National Self-Check Month, and early detection makes a HUGE difference. If something feels off health-wise, consider this the sign you've been waiting for. Seek medical help TODAY!
Our Peer Support Specialists are intensely trained, personally impacted by ALS, and ready to provide YOU the support you need. Contact our Support Team to get matched at bit.ly/GetALSSupport
February 1, 2026 at 2:51 PM
Our Peer Support Specialists are intensely trained, personally impacted by ALS, and ready to provide YOU the support you need. Contact our Support Team to get matched at bit.ly/GetALSSupport
Check out Cyndy Mamalian's gripping, funny retelling of her ALS caregiver journey. Grab your copy from our online store TODAY! bit.ly/ALSscratch
January 31, 2026 at 8:06 PM
Check out Cyndy Mamalian's gripping, funny retelling of her ALS caregiver journey. Grab your copy from our online store TODAY! bit.ly/ALSscratch