A conversation with two disability advocates with CMT, part 2

Last in a series. Read part one.

Previously, I shared part of my conversation with disability advocates Lily Sander, a Muscular Dystrophy Association (MDA) National Ambassador and person with Charcot-Marie-Tooth disease (CMT) type 1E and hereditary neuropathy with liability to pressure palsies; and Erin Black, who has CMT1A.

Now, I’m happy to share how Sander and Black practice disability advocacy.

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YL: How did your advocacy work begin?

EB: In 504 meetings and in doctors’ offices, I learned I needed to use my voice in decisions about my life and my CMT. College was when that advocacy became something bigger.

I majored in disability studies. [In an] intro to disability studies class, I remember looking around at people with different connections to disability and thinking, “These people get it.”

Right out of college, I got hired to help young people living with disabilities learn how to share their stories and keep their disability advocacy going beyond the four walls of school.

I hope that my career continues down the path [of disability advocacy] and doesn’t ever stray too far from it because it’s where I thrive the most.

LS: My advocacy work started in school, advocating for academic accommodations as my symptoms progressed. My involvement grew with patient organizations, including those specifically working within CMT communities.

On the federal level, my advocacy work began with the MDA, an organization that unites people from more than 300 disease groups. [In 2025,] I was named an MDA National Ambassador. Through the MDA, I’ve met with my representatives and senators.

MDA’s advocacy work includes several priorities. One I helped with regarded the Rare Pediatric Disease Priority Review Voucher Program, specifically to extend voucher programs for pharmaceutical [and] biotechnical companies to create new drugs for pediatric diseases. That one stands out to me because it’s been important in the CMT space.

But there are other efforts, including those regarding airline travel — we’ve had some great policy and advocacy wins there.

The MDA team is in [Washington,] D.C. all year long, quietly working, reminding representatives we’re still part of the conversation — that the disability rights movement didn’t end with the Americans with Disabilities Act.

How do you remain aware of the needs of the disability community?

LS: The number one thing for me is connecting with patients. That’s the number one reason I do any of the work I do in this space.

My DMs [direct messages] are also open on Instagram. Social media gives good insight into how people we don’t even personally know are doing. I also connect with people in real life — that’s magical to me.

I don’t have formal law training. I’m an expert on my lived experience, but I look to professionals in disability law and policy to contextualize challenges and translate them into actions we can do now.

I’m thankful to MDA’s fantastic policy analysts and its team that sets a great agenda on the legislation we advocate for. Whether someone is joining us “on the Hill” or advocating from home, the [objectives are] very clear and laid out.

EB: The best way to stay informed is to know people with disabilities and not one type of disability. Pretty much every weeknight, for me, is filled with meeting different disability community and support groups. I also just FaceTime friends and ask them, “How is it living with disability today?”

I also surround myself with like-minded advocates. There are great national umbrella organizations — the MDA is one of them. But there’s also the American Association of People with Disabilities. I follow such organizations and try to stay up to date on their work.

In my professional life, I work in the rare disease pharmaceutical space. Through that, I absorb really powerful stories of people with rare diseases that are so different from my experience with CMT.

What are barriers to solidarity among the disability community?

EB: The most powerful element of solidarity is storytelling. Stories are the building blocks of advocacy, better understanding, empathy. It goes beyond hearing other people’s stories. Solidarity is built on hearing them, sharing your own, and then finding common ground. So I’d like to see more voices, more stories.

LS: People are afraid of what disability means. I know there’s a great fear I’ve often seen among parents of kids with disabilities. There’s a fear of the future, of progressing [symptoms] — a fear that something is terribly wrong.

But among kids, people who haven’t had their worldview corrupted by certain ideas and certain fears, there’s often just understanding and empathy. So, I would say, a barrier to greater solidarity and greater disability advocacy is a fear of identifying as disabled or having a disability.

***

I always find news of advocacy work encouraging. I’d love to see more CMTers connect and find places within larger disability communities.

Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.