Congress extends ALS research funding through 2031 with safety rules.

What it does

The bill keeps money for ALS research through 2031. It adds other rare brain diseases to the program. Drug makers must share safety data when they ask for grant money. Researchers must report serious health problems to their grant-maker. The FDA must write a plan in 18 months. The plan covers its five-year strategy for ALS and similar diseases. The FDA must report back in five years.

Who it affects

People with ALS and similar rare brain diseases get continued access to new treatments. Drug companies and research centers must follow new rules about sharing data.

One thing to notice

The program started for ALS only but now covers other rare brain diseases.

From the analysis of the bill text, linked under Primary records below.

Where it stands

103 cosponsors: 64 Democrats, 39 Republicans.

• Apr 6, 2026 — Introduced · Congress.gov: “Introduced in House”
• Apr 6, 2026 — Referred to House Committee on Energy and Commerce · Congress.gov: “Referred to the Subcommittee on Health”
• May 13, 2026 — Markup held in committee · Congress.gov: “Subcommittee Consideration and Mark-up Session Held”
• May 21, 2026 — Reported out of committee · Congress.gov: “Ordered to be Reported (Amended) by the Yeas and Nays: 46 - 0”
• Jul 20, 2026 — Floor vote scheduled · Congress.gov: “Mr. Guthrie moved to suspend the rules and pass the bill, as amended”
• Jul 22, 2026 — Passed the House · Congress.gov: “On motion to suspend the rules and pass the bill, as amended Agreed to by voice vote”

Dates and quoted wording are Congress.gov's action record; the timeline shows status changes, not every procedural step.

Money around this bill

4 groups reported lobbying about this bill. They filed 4 reports from Jun 2026 to Jun 2026.

Those reports show $144,000 in lobbying spending. Each report lists about 12 bills. So that money was not all for this bill.

More groups named this bill than 72% of bills with any report.

Mike Quigley, who sponsored the bill, received $538,448 from PACs for the 2026 election.

• Muscular Dystrophy Association, Inc. — $60,000 in 1 report
• I Am Als — $30,000 in 1 report
• The Als Association — $30,000 in 1 report
• Nrx Pharmaceuticals Inc (formerly Known As Neurorx) — $24,000 in 1 report

Lobbying is legal. These reports show who lobbied about this bill, not what changed.

Words to know

• ALS — A disease that weakens muscles over time. The letters stand for amyotrophic lateral sclerosis.
• FDA — The government agency that approves new medicines and checks if they are safe.
• serious health problems — Bad medical events that happen to people in medical studies or drug trials.
• lobbying — Trying to influence lawmakers about a bill. Companies and groups pay people to do this.
• PACs — Groups that collect money and give it to candidates for office.
• sponsored — To sponsor a bill is to introduce it in Congress and put your name on it.