Jenny’s Story: Life with ML
When you meet Jennifer “Jenny” Klein Jackson, you’re struck first by her grounded calm—then quickly by her humor, warmth, and the unmistakable sense of purpose she carries. Today she is a scientist, nonprofit leader, yoga instructor, newlywed, and—remarkably—one of the oldest known individuals living with mucolipidosis (ML). 
Jenny was diagnosed in 1999, at a time when few resources existed for ML and even fewer treatment options. “There was a lot of pain associated with day-to-day life,” she recalled. Walking was limited to minutes at a time, and she spent much of her teenage years using a wheelchair. After major reconstructive surgeries in her late teens and early twenties, everything changed. She relearned how to walk and rebuilt her strength—enough that, as she jokes, “I probably can out-walk most people, but I’m bionic, so I have advantages.”
As her health stabilized, Jenny began to build a life for herself. She eventually settled in North Carolina, where she and her husband, Joe, now live on a few quiet acres. The two met online, clicked immediately, and married in the North Carolina mountains less than a year ago. Their home, like their partnership, reflects a sense of peace and forward motion.
That same momentum carried into her career—though it wasn’t a path she expected. “I got pulled into the biotech space kicking and screaming,” Jenny admitted with a laugh. A chance encounter at NIH Rare Disease Day years ago led to her first internship, and soon she found herself energized by the work. Today, she serves as Director of Program Management and Operations at Odylia Therapeutics, a nonprofit biotech developing therapeutics for rare diseases. She also recently accepted the presidency of the International Society for Mannosidosis & Related Diseases (ISMRD), a global organization supporting the glycoprotein storage diseases, including ML.
Even with her leadership roles, Jenny acknowledges that progress for ML can feel slow. There are still no approved treatments, and clinical care has changed little over time. Gene therapy research offers hope, but she keeps her expectations grounded. “I think gene therapies could be beneficial, but it’s not going to solve all the problems,” she said.
Living as one of the oldest people with ML brings its own mix of gratitude and grief. Many of the peers Jenny grew up with have passed away. “It’s a weird feeling like the lone wolf left standing,” she shared. And although she is doing well today, she wishes others understood that her struggles haven’t disappeared—they’ve simply become easier to overlook. “A lot of people look at me now and assume nothing’s wrong… but that’s just not true.”
Her path cannot be separated from her family’s deep roots in the rare disease community. Her mother, Terri Klein, President & CEO of the National MPS Society, helped build early family fundraisers that grew into national events. “Everything that started from the early days was a family affair,” Jenny said. “It’s great to see it grow and expand.”
Looking ahead, Jenny and Joe hope to start a family, and Jenny also feels ready to help drive ML research forward in new ways.
For now, life feels steady and full of possibility. “Right now, so far, so good,” she said. “I’m as healthy as a horse—let’s keep it that way.”
