ALS May Run in Catherine’s Family, But So Does Strength and Optimism

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.

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FDA Approves Radicava to Treat ALS

Emflaza

Today, on the first Friday of ALS Awareness Month, the U.S. Food and Drug Administration (FDA) approved edaravone (brand name Radicava), to treat ALS (amyotrophic lateral sclerosis). Under development by Mitsubishi Tanabe Pharma America, Radicava was approved in 2015 to treat ALS in Japan. It’s the first drug to be granted FDA approval to treat ALS in the United States in more than 20 years.

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What is Advocacy and Why Should You Care?

health care reform bill

In advance of MDA’s first ever Advocacy Conference, taking place April 23-25, we asked several advocates to unpack the idea of advocacy: what is it, why they became advocates and why it is necessary for others to follow their examples. Their responses follow.

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