Jennifer Robb, a resident of Kansas City, MO, is an energetic, lively woman in her mid-50s, a mother of two, a wife, and a former billing and coding specialist. She talks quickly and enthusiastically, frequently making jokes—her energy is infectious. Jennifer is also living with ALS and participating in an Expanded Access Program (EAP) funded by ACT for ALS. ACT for ALS is the 2021 law that, when passed, provided funding for EAPs, allowing more people access to therapies for ALS than ever before. “I’m so fortunate that I have this access and opportunity,” Jennifer says. “But it really needs to be available to everyone.”
Jennifer started noticing symptoms of ALS in 2023 when she experienced foot drop, but she attributed the phenomenon to a pre-existing condition. “I had always had a bad back, so when I had the foot drop occur, I thought it was a pinched nerve or sciatica—something related to the bad back and symptoms I’d always had with that,” she says. She tried PT for the symptoms but “everything kept getting worse,” until she was diagnosed with ALS in April of 2024. She was 56 at the time.
Immediately after diagnosis, she started investigating options for clinical trials that she could join. But, she had no luck, saying that the nearby trials were either not recruiting or that her symptoms aged her out of eligibility (she’d been experiencing symptoms at this point for more than 18 months).Then, several months after her diagnosis, she learned about the HEALEY ALS Platform Trial, an ACT for ALS EAP, for which she was qualified and eligible. HEALEY is a clinical trial designed in partnership with Northeast ALS Consortium and offered at multiple sites, offering testing of multiple treatments at once. Jennifer applied to the EAP in August. By October, she’d been accepted and was taking new medication.
“Getting into that trial made me feel like I was part of a Christmas miracle,” says Jennifer.
“When I started, my breathing was below average, it wasn’t good,” she says. “At my 12-week appointment, the pulmonologist’s test showed that I was in normal limits. I went to my ALS clinic a week later, had a big respiratory workup, and it too showed that I was in normal limits. It’s respiratory failure that we all end up dying from—so having my breathing improve was positive.”
“I could tell right away on the EAP that I was feeling a little better,” she says. “You’re always tired with ALS, but I was not as tired as usual.”
When Jennifer was first diagnosed, her youngest daughter was in college. “My only goal was to live until May 2025 to see her graduate,” she says. On May 22, Jennifer watched her daughter graduate. Weeks later, at her regular check-up in June, her breathing was still within the normal range. Now, she continues to be stable, week after week.
“I wouldn’t be in the normal range of breathing if I weren’t participating in this trial,” she says. “I’m so lucky to be one of the 200 people living with ALS on the EAP portion of this trial. Expanded access programs are all about giving us the same opportunities that others with other diseases have—and giving us hope.”
And while Jennifer knows that she’s fortunate to have access to these critical drugs, she emphasizes that everyone living with ALS deserves this same access. “You’re almost never going to meet the criteria to be in these clinical trials [when you’re diagnosed with ALS],” she says. “And there will be spans of years where there are no clinical trials. With other illnesses, there are so many opportunities to be involved in these trials and take the medicine. There’s not that access with ALS. It’s so important that we get that chance.”
Meanwhile, Jennifer continues to adapt to the challenges of ALS. She’s still mobile and speaking, but she loves trying out new mobility devices. “I research and buy gadgets, special walkers that are made of different materials like carbon, so they’re really light, with all-terrain wheels that you can take on other surfaces (like a toddler vehicle),” she says. Last year, she tested that all-terrain mobility device at a fall music festival, with great success. “I was just trucking right through!” she says, happily. As for the future, Jennifer looks forward to staying stable, continuing to travel with her husband, and watching her daughters grow up—thanks to the treatment she’s receiving.