Community support is the driving force behind growing association
A chat with the executive director of the Lambert-Eaton LEMS Family Association
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When I was born prematurely on July 3, 1971, I weighed 2 pounds. My father said that my whole body could fit in the palm of his hand. So, it’s no surprise that I grew up familiar with the phrase “good things come in small packages.” I heard this from my grandmother, my parents, and lovely senior adults my entire life.
I’ve come to believe that statement is true in many areas of my life. This Lambert-Eaton myasthenic syndrome (LEMS) community has proven it time and again. Though we are a small community, we are a mighty force when we work together.
So it was such welcome news when, in 2023, we saw a small group of people living with LEMS do something really big when they set out to start the Lambert-Eaton LEMS Family Association.
In 2025, the association’s board was able to hire its first executive director, Madeline Miller, who is proving to be a mighty force within the LEMS world. Her vision for advocating for, educating, encouraging, and engaging with our community is admirable. There is no doubt we will all benefit from her efforts.
I recently had the opportunity to chat online with Miller about ongoing efforts to better serve the LEMS community. Excerpts follow:
LD: Could you share your background and what inspired you to take on the executive director role at the LEMS Family Association?
MM: After going through some orthopedic challenges as a teenager, I knew I wanted a career in patient advocacy. I went on to work in fundraising and consulting with several rare disease organizations in the dermatology and neuromuscular space, where I developed a strong passion for helping communities grow and thrive. The opportunity to bring those skills to the LEMS Family Association, to help strengthen the organization and better serve patients and families, felt like a natural and meaningful next step.
What are the objectives and the overall vision that guide the work of the LEMS Family Association?
The vision of the LEMS Family Association is a world where no one faces a LEMS diagnosis alone, and every patient has access to support and quality care. Our objectives are to connect patients, caregivers, and clinicians, raise awareness, and share real experiences. We hope this community will help drive meaningful improvements in research, advocacy, and daily life for the LEMS community.
What are some highlights the LEMS Family Association has planned for the near future?
We’re excited to expand the resources we offer our community this year. We’ve launched our first educational webinar, “LEMS Learn,” and are building a peer connection program so patients can support one another one-on-one. We’re also recruiting researchers and clinicians to strengthen our work with their expertise.
What lasting thought would you like our community to take away from today’s conversation?
I hope our community feels the energy and commitment behind this work. A family is only as strong as its members, and we invite everyone to connect by joining an event, reaching out, and sharing what support you need. Together, we can make the journey easier for everyone who is newly diagnosed with LEMS.
Note: Lambert-Eaton 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 Lambert-Eaton News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenic syndrome.
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