North Star ALS

North Star ALS The Science Hub for the ALS Community

🩵Today and always, we honor the fathers living with ALS, the fathers we remember, and the caregivers who carry love forw...
06/21/2026

🩵Today and always, we honor the fathers living with ALS, the fathers we remember, and the caregivers who carry love forward in every act of care.

ALS might reshape what fatherhood looks like day to day, but it never changes how deeply that love is felt or given.

To the dads still here fighting: we see you.

To the dads we’ve lost: you are remembered.

To the caregivers who step into spaces left behind: thank you for carrying that love forward.

This Father’s Day, we hold space for all of it.⭐️

✨North Star ALS earned the 2026 Candid Platinum Seal of Transparency in our very first year as a nonprofit. The Platinum...
06/15/2026

✨North Star ALS earned the 2026 Candid Platinum Seal of Transparency in our very first year as a nonprofit. The Platinum Seal is the highest level Candid offers, recognizing organizations that openly share not just their financials and leadership, but their goals, strategies, and impact metrics.

Because the ALS community deserves organizations that are as open about how they operate as they are ambitious about what they're working toward. ✨

06/10/2026

💫 ALS can look so different from person to person, something we also have to address through research and therapeutics.

Every trial result and discovery adds another piece to a much larger puzzle. Each insight builds our understanding and informs what research comes next.

Progress comes from continually building on what we've learned, refining ideas, asking better questions, and developing therapies that are more targeted to the diverse ways ALS affects people.

That's why we pay attention to the entire pipeline, from early scientific discoveries to clinical trial outcomes. Because people living with ALS today need meaningful options, and progress depends on building thoughtfully on the knowledge and experiences that came before.

Join us this summer for a special North Star ALS program called Illuminate: Precision Medicine to shed light on targeted drug development. Keep following us here for more info coming soon!⭐️

06/10/2026

✨North Star ALS is honored to share community led initiatives that support others living with ALS.

Meet Bhumi Pathak who is living with ALS and identified a need for community for women who are also living with ALS and who are over the age of 40. So she did something about it and established ALS Women Warriors to offer support and resources🩵. In a disease that takes so much, sharing and engaging with others who understand is meaningful and valuable.

You can learn more about this effort at
www.alswomenwarriors.com and join their Facebook group, Women Supporting Women With ALS

05/30/2026

☀️Our co-founder, Nadia, shared a little about her last four years of learning more so that we might push for change and tackle heterogeneity a little differently in ALS.

All her coursework over four years, through the lens of ALS, and with a fresh loss heavy on her mind, while continuing to work in ALS, and oh this widowed parenting part (we see all of you who understand that all too well and gosh we need that awareness too).

Is it a happy graduation? We see it more as a milestone in science focused advocacy for ALS🩵. It’s our science.✨





05/29/2026

☀️We were so touched to see the outpouring of comments in the last three days on the post from our Board Member, Lori Larsen Heller. Clearly her silent words resonated so much with so many that have known ALS.

Honestly we didn’t know how to follow that up, so we have been absorbing your thoughts and comments.

We are with you.🤍




On this Memorial Day, we honor those who served. And we remain committed to the science that serves them.
05/25/2026

On this Memorial Day, we honor those who served. And we remain committed to the science that serves them.

05/24/2026

☀️“There is beauty in meeting people, but the tragedy is the loss.”

ALS is one of the cruelest diseases there is, and yet the people it touches are some of the most extraordinary. Lori Andre knows this so well. She shares what it means to build relationships inside this community, relationships built on shared information, mutual support, and a fierce collective push for urgency and change. And she shares what it means to lose those people.

We never get used to it.

May is ALS Awareness Month, and we need awareness for sure. We need the world to look at this disease for 31 days.

But for those of us living inside it? We see each other every single day. We do not need a month to remember❤️.


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