An expression of the live unlimited spirit, stories and voices of the MDA community
ALS is a disease of the parts of the nervous system that control voluntary muscle movement. In ALS, motor neurons are gradually lost and the muscles they control become weak and then nonfunctional.
Researchers are looking for people to participate in the Answer ALS: Individualized Initiative for ALS Discovery study.
The Moctezumas share how they have become experts at caring for their 25-year old son, Michael, who lives with DMD.
An MDA supported project led to the discovery of a promising biomarker that could be used in developing and testing therapeutics to treat ALS.
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.
Kate, who lives with SMA type 3 and has directly benefited from, Spinraza, a medication that can trace its root back to MDA, encourages supporters to go the distance for MDA via their local MDA Muscle Walks.
Jie Jiang, postdoctoral fellow at the University of California – San Diego, was awarded an MDA development grant to improve understanding of ALS.
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.
Find answers to your questions about access, cost and availability of DMD drug Emflaza.
While many have heard of ALS, a much smaller group actually knows what causes it and who it impacts.
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