Coming soon! Where the Sunflower Grows: Uplifting Musings from my ALS Journey

The NIH estimates that there are 7,000 rare diseases in the U.S., and fewer than 5% have an effective treatment, leaving hundreds of millions worldwide without options. Researchers at University of Notre Dame place patients and families at the center of their work.

➡️🖥️ The 2024 Annual NEALS Meeting has been transitioned to a fully virtual event. Visit the Annual Meeting website for all the latest details: meeting.neals.org

Dr. King said we must never lose "infinite hope." How? Let's talk about it next week with Michael Eric Dyson Stacy Hawkins and me at The Philadelphia Citizen festival. Register here: thephiladelphiacitizen.org/iwss/

A MUST See! ! Thank you CBS Mornings Tony Dokoupil Gayle King Nathaniel E Burleson Vladimir Duthiers for highlighting EstafeX ALS story and nonprofit HopOnACure. They are making a BIG impact in a disease that desperately needs funding. Beautiful song!! Jen Hopkins

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

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

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 Pat Dolan Farmstrong

Be good to people for no reason

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

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/

Republicans just voted to hurt our economy, endanger our communities, and threaten our national security. Statement from New Dem chair Rep. Brad Schneider 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

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

Thank you for being part of the ALS Caucus, Rep. Rosa DeLauro! 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.

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.👇

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