When Jone See, a devoted mother of five and doting grandmother to nine, was diagnosed with ALS in December 2014, her loving family and large group of friends channeled their energy into raising money for a cure through the ALS Bike Trek MN. Jone, who passed away on May 3, won’t be there to cheer the team on in person this year, but her spirit, optimism and hope for a cure lives on.
A typical day is anything but for Catherine Scott. She fills her time creating weekly dinner menus and recipes, making to-do lists for her kids, doing advocacy work, and working on a book and a new blog. And she does it all with only the movement of her eyes, thanks to an assistive device called a Tobii Dynavox I-15. Catherine acknowledges, “You would think, as a mostly immobile and bedbound person, my life would be uneventful, but you would be wrong.” It’s all part of Catherine’s plan to make the most of every day. “I am living with ALS, not dying from ALS,” she says.
In the decades since Leslie Krongold’s mother died at the age of 56, she has learned that they likely shared a neuromuscular disease — myotonic dystrophy — and, as Leslie approaches her own 56th birthday next year, she feels more committed than ever to defying the odds her my mother couldn’t.
Filmmaker Tom Caamano, who received a surprise diagnosis of mitochondrial disease in 2009, perseveres despite symptoms, which include muscle weakness and fatigue, that threatened to derail his career. Today, he is not only thriving, he’s helping others facing similar diagnoses feel empowered, too.
In MDA, Destiny found the support and community she needed to live fully as a 12-year-old, as a college student and now as a mom to two kids. That’s why she’s been a passionate Muscle Walk fundraiser for the past 15 years, whether she was well enough to walk in the event or not. That’s why she’ll continue participating.