Nearly 10 years after the ALS Ice Bucket Challenge spurred global awareness about the neurodegenerative disease, patients and doctors on Thursday stressed the need for additional funding from Beacon Hill as they touted promising treatments under development from Massachusetts-based researchers.

But many of their legislative priorities, aimed at removing insurance coverage barriers and easing steep out-of-pocket expenses, have already been sent to study or are stuck in committee with just three months remaining for formal sessions.

Steve Kowalski, an advocate who has ALS, called it an “expensive disease to live with” when taking into account equipment and home care needs, among other medical expenses. Thursday marked the first advocacy day event hosted by the ALS Association, the nonprofit ALS ONE, ALS Therapy Development Institute, Compassionate Care ALS, and the Healey & AMG Center for ALS at Massachusetts General Hospital.

“I hope to be here next year and hope to have some very targeted asks that we can give to our legislative leaders here at the State House that they can quickly act upon, and the word ‘quick’ is important because the ALS clock is different than the average clock,” Kowalski said. “It’s ticking at a different pace, and certainly not ticking at the pace that legislation gets passed. But that is a key message to our legislators in the room: It may seem like we’re impatient, but it’s because our clock is ticking, and we don’t have time to wait.”

The average life expectancy for someone with ALS is two to five years after diagnosis, according to information shared by advocacy groups gathered at the Grand Staircase.

About 5,000 people are diagnosed with ALS, often referred to as Lou Gehrig’s disease, each year. Advocates say caring for an ALS patient can come with $250,000 in out-of-pocket costs each year.

Sen. Brendan Crighton promoted two of his bills to advocates, which he said would prohibit a type of copay assistance program that can impede patients’ access to treatments (S 609), as well as block the use of a “discriminatory” quality-of-life metric in health care pricing calculations (S 730). Crighton did not mention the bills were sent to study by the Joint Committee on Health Care Financing.

“The cost associated with ALS is far too high,” Crighton said. “We need to make Massachusetts a place where you can access your treatments without any added additional financial burden.”

Dr. John Goodson, a physician at MGH who has ALS, said gaps in ALS care can be attributed to insufficient oversight by state regulatory agencies, as he called for better accountability of insurance providers.

“There’s also a desperate need to find and train caretakers to be with those of us who have ALS at home,” Goodson said.

In a legislative victory for supporters, Rep. Mark Cusack said the House budget steers $150,000 to the ALS Association to provide care for patients with the disease. Cusack signaled Crighton would be fighting to secure additional funding in upcoming Senate budget deliberations.

Sen. Sal DiDomenico, who said his mother died from ALS in October, sought to build hope for patients and their families.

“I know this is a very tough issue for folks, but in my heart, and my mind, and my soul, I know we’re going to cure ALS. I know we’re going to do that,” said DiDomenico, who held up a photograph of his mother. “I know we have the bandwidth, and we have the minds, and we have the political will to make that happen.”

DiDomenico recalled how his mom was taking 18 to 20 pills daily for ALS, a treatment option that he said was not available just a few years ago.

“We’ve seen how far we’ve advanced in the medical field in a very short time, and there’s so much hope going forward to do even more,” he said.

Dr. Sabrina Paganoni, a physician scientist at the Healey & AMG Center for ALS, affirmed there’s been “a lot of progress” in recent years, including with more treatments being developed than ever before. The FDA last year approved the first gene-targeted therapy to treat ALS, she said.

“That happened in Massachusetts. It is the biggest breakthrough in ALS research ever, and shows with the right science and resources, we can cure the disease,” Paganoni said, referring to Biogen’s ALS drug.

Paganoni said researchers are making progress on developing biomarker testing to diagnose diseases earlier and new drugs for different types of ALS.

“In our hospital and all the other research hospitals in Massachusetts, we’re really working hard to make progress,” she said. “The ALS research community in Massachusetts is more active than ever.”