Deb Paust

FDA is seeking input from the rare disease drug development community on its LEADER 3D educational materials! Comments are due by April 3, 2026. regulations.gov/search?filter=… #RareDiseaseWeek

Important opportunity for people living with ALS. 👇

10 Best Instagram Influencers to Learn Storytelling digitalvidya.com/blog/social-me… via @I_m_Digital

The ALS Network is proud to collaborate with the @BarrowNeuro’s Summer Internship Program, led by Rita Sattler, PhD, to sponsor @ASU neurology student and intern Ria Moharil. Read more about the next generation of ALS researchers: ow.ly/lS6M50WKFzY

I'm back in DC to vote HELL NO on Trump's big bad tax bill.

The Senate's tax bill is the most dangerous legislation in modern history—ripping health care from the sick, food from the hungry, and hope from working families, all to shovel more tax breaks to billionaires and corporate executives. Just despicable. My full remarks.👇

Thank you for being part of the ALS Caucus, Rep. @rosadelauro! We are so grateful for your commitment to supporting the ALS community and prioritizing the urgency of ALS, funding for research, support for people living with ALS, and more.

Republicans just voted to hurt our economy, endanger our communities, and threaten our national security. Statement from New Dem chair @RepSchneider on the passage of the Continuing Resolution.

When it comes to government funding, we find ourselves at a crossroads: we can either pursue a long-term continuing resolution and abandon the work we've accomplished as Congress, or we can face a government shutdown, which is also an untenable alternative. We can do better than this.

Republicans want to brag about funding the government but what good is funding when there's no one left at these departments to provide services? Republicans won't get my vote on government funding until they take REAL steps to improve government. They can start by firing @elonmusk.

Urgent action! The House has released a continuing resolution bill to fund 2025 with dramatic cuts to the Department of Defenses’s CDMRP, which funds ALS research. We cannot allow this. Ask your legislators to continue to fund this critical program: iamals.org/cdmrp2025/

Coming soon. More Than Our Stories - the eighth annual! morethanourstories.org Be there or be square.

Be good to people for no reason

More Than Our Stories 2025 Feb 4-5 Registration will open soon. Meeting location on Feb 4 is near Union Station, DC. Cyber-Monday might be your friend for travel bargains. This is the #kickALS advocacy conference... Nothing else like it. morethanourstories.org

On #givingtuesday support a new nonprofit - GeoALS, using GIS (Geographic Information System) to #endALS and support researchers, connect underserved communities, improve access to clinic care and more. geoals.org @Team_Thriving @farmstronginfo

You can donate to ALS research in honor of Janie and everyone living with ALS this Giving Tuesday! #EndALS #GivingTuesday als.net/donate/givingt…

If it’s on your heart to support ALS research on this Giving Tuesday, take a look at @HopOnACure ‘s impact so far and consider supporting their mission to #KickALS. #als hoponacure.org

A MUST See! ! Thank you @CBSMornings @tonydokoupil @GayleKing @nateburleson @vladduthiersCBS for highlighting @johndhopkins ALS story and nonprofit @HopOnACure. They are making a BIG impact in a disease that desperately needs funding. Beautiful song!! @JenhopHopkins