Updated April 2, 2026 at 3:09 PM EDT
, 37, and Mira Hudson, 29, are part of a largely unseen group: . They joined and eventually became leaders of , a support and advocacy group whose participants include more than 150 women. The group was founded by , who died recently at age 33.
Stellato and Hudson join host Robin Young to share their stories, their challenges as women with ALS, and their memories of Stavenhagen, whose legacy they hope to preserve.
7 questions with Shelly Stellato and Mira Hudson
Shelly, can you share more about your ALS journey?
Shelly Stellato: 鈥淚 was diagnosed with ALS in 2020 after seven months of symptoms. I was experiencing weakness in my wrist and hands. Initial suspicions from doctors was carpal tunnel. But then my legs began twitching. A neurologist recommended a test to rule out ALS, but assured me it wouldn鈥檛 be ALS because that was an old man鈥檚 disease. Unfortunately, he was wrong about that.
鈥淭hat was nearly six years ago, and in that time, a lot has changed. I鈥檝e lost my ability to move my limbs, walk and speak. I鈥檓 communicating with an eye gaze computer, and I鈥檓 in a power wheelchair full time. I also have a feeding tube because swallowing is difficult. But ALS progression is different for everyone. As you will see, Mira and I have totally different paths.鈥�
Mira, can you talk about your ALS journey?
Mira Hudson: 鈥淚t started back when I was 14. It started in my fingers. My fingers were getting weak when I was in middle school, and I was misdiagnosed with SMA [spinal muscular atrophy].
It just wasn鈥檛 鈥榥ormal鈥� at all for a young woman to have ALS. And also how slow my progression was. It didn鈥檛 line up with the typical ALS. So they kept saying, 鈥極h yeah, it鈥檚 definitely not ALS,鈥� and then I finally got diagnosed with ALS. My voice is not affected yet, but my legs and my arms are definitely.鈥�
What did it feel like to finally have a diagnosis?
Hudson: 鈥淚 definitely was extremely overwhelmed and scared. But over time, I feel like the relief started to set in because I was completely alone 鈥� and I had no idea what to do. And I didn鈥檛 feel like I had the type of support that we get with Her ALS Story. So it actually started to really improve my life. Being diagnosed because of how lonely it was.
What is it like to be a founding member of Her ALS Story?
Stellato: 鈥淚 was lucky enough to be part of Her ALS Story from the start in 2021, just one year after my diagnosis. At first, our founder, Leah Stavenhagen, was gathering young women with ALS for a social media campaign. She wanted to tell our stories and raise awareness that ALS doesn鈥檛 discriminate. We started meeting over Zoom to trade tips and share experiences. Today, we have more than 100 members internationally.鈥�
What are the added challenges for women with ALS?
Stellato: 鈥淏eing a young woman with ALS adds a layer of complexity when we鈥檙e diagnosed. Many of us have to make decisions between treating ourselves or starting a family because there is no research on what effects treatments have on pregnant women. We have to navigate having our periods while we lose dexterity.
鈥淢any of our members are parents to young children and have to figure out what motherhood looks like when you can鈥檛 physically take care of yourself or your children. Then there is trying to find clothes that work when you don鈥檛 have working arms, trying to figure out hair and makeup. When you get ALS, you don鈥檛 stop being you. So you have to learn to adapt. That鈥檚 the beauty of Her ALS Story. We鈥檙e always sharing hacks and encouraging each other to make things work.鈥�
What can you share about Stavenhagen, the founder of Her ALS Story?
Stellato: 鈥淟eah was cool, classy, kind and intelligent. When she identified a gap in the ALSworld, she filled it on her own in her work with Her ALS Story. She was inclusive, always looking to raise others up. She made living with ALSlook effortless. Leah lived in Paris part of the year and traveled often. She never stopped living a fabulous life, always put together with her impeccable fashion sense. She was a dear friend of mine, and I miss her every day.鈥�
What are the emotional and mental challenges of being in a group where all the members have a fatal disease?
Hudson: 鈥淚 think it鈥檚 just appreciating what we have in the now. I鈥檇 rather love and lose 鈥� what鈥檚 that saying? Then never to love at all. And these relationships with these women are incredible. There鈥檚 so much support and honesty. And we all understand each other in a way no one else can.鈥�
This interview was edited for clarity.
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produced and edited this interview for broadcast with . Miller-Medzon adapted it for the web.
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