Keeping it Together: This woman has ALS − just like 22 other people in her family

Jessica Morris' knee started buckling back in March 2022 while she played with her daughter at the park. "Well, that's kind of odd," she thought. Maybe she needed to up her exercise routine. But when her symptoms intensified, the day she dreaded arrived: A visit to her family's neurologist at Northwestern University.

Hi, my name is David Oliver and I am one of Paste BN's wellness reporters. A genetic test confirmed it the following October: Morris had ALS – just like 22 other people in her family with the hereditary SOD1 ALS gene. ALS is short for amyotrophic lateral sclerosis, a terminal neurodegenerative disease you might know as Lou Gehrig's disease. By December, she required a foldable, mechanical wheelchair and resorted to crawling up the stairs to her bedroom.

Nearly 5,000 new patients are diagnosed with ALS each year, per the CDC. May is ALS awareness month.

Devastated by her diagnosis, she started thinking about her short-term future, including a Disney Cruise with her husband and their three kids. At least she didn't need to worry about her kids carrying the gene because they are adopted. As her husband put it: "'We don't have to live ALS every day. You have ALS, but you don't have to live it every day.' And we really stuck by that. And maybe that won't work for everyone. But for us it does."

But, as Morris' doctor put it, "this isn't your dad's ALS." Treatments, studies and research are giving patients hope in 2024. And for the 2% of patients with the SOD1 gene, one new medication – Qalsody (tofersen) – is offering more hope than ever. It's actually slowing the disease down in some people like Morris and, anecdotally, may even make them better.

For more on this story, go here. And check out other stories from the team this week below.