The Lambert-Eaton LEMS Family Association

The Lambert-Eaton LEMS Family Association We advocate for LEMS patients around the world. By improving it's visibility we look to improve earlier diagnosis and better treatments for LEMS.

The Lambert-Eaton LEMS Family Association is a 501c3 nonprofit supporting rare disease patients, family, and caregivers for the rare disease, Lambert-Eaton Myasthenic Syndrome (LEMS). Our mission is to improve awareness of LEMS to doctors, clinicians, academics, researchers and the general public. We support research through our administration of the LEMS Patient Registry available free to researc

hers, academics, and pharmaceutical companies. We advocate for LEMS patients through local, state and federal legislative advocacy. We not only represent our rare disorder, but the best interests of all rare diseases. Family is important to us! As a nonprofit supporting an ultra rare disorder, we work hard to foster belonging and family within our patient population and everyone who's lives are affected by LEMS.

08/27/2026

Hey LEMS community, we want to hear from you! We are in the process of making packets for new patients and wondering...

What is one thing you wish you had known when you were first diagnosed with LEMS?

It could be something about symptoms, treatment, finding a doctor, talking with family, navigating daily life, or simply something that helped you feel less alone.

Share in the comments. Your experience will help someone who is just beginning their LEMS journey. đź’™

We have 23 patients registered for the Chit Chat on Saturday. Does that include you? Sometimes the best support comes fr...
08/26/2026

We have 23 patients registered for the Chit Chat on Saturday. Does that include you?

Sometimes the best support comes from talking with someone who simply gets it.

Our Patient Chit Chats provide an informal opportunity for people living with LEMS to connect, share experiences, ask questions, and learn from one another.

Register here:

LEMS Family in Action From online gatherings to in-person outreach at medical conferences nationwide, our events bring visibility to LEMS and connection to our community. Join us virtually, support us on the road, or help us bring LEMS awareness to your area. Want to host an LEMS event near you? Ema...

We have a brand new episode, " Creatine and LEMS: Hope, Hype, or Helpful? We discuss the supplement, Creatine, with Dr....
08/16/2026

We have a brand new episode, " Creatine and LEMS: Hope, Hype, or Helpful?
We discuss the supplement, Creatine, with Dr. Stephen Meriney, Ph.D. Professor of Neuroscience at The University of Pittsburgh.
Why is everyone talking about it? Who is using it? What is it, and how does it work? Dr. Meriney speaks about the clinical evidence for creatine, why it's interesting scientifically, and how it might be beneficial to LEMS patients. Give it a listen!

Quickly and easily listen to Pull Up a Chair Let's Talk LEMS for free!

Let's chat about caregivers. Maybe you have one, maybe you are one. LEMS patients and many other's need assistance fro...
08/15/2026

Let's chat about caregivers. Maybe you have one, maybe you are one. LEMS patients and many other's need assistance from friends, family, and healthcare workers to help them navigate life. We'll talk about this very important subject on the August Chit Chat, Saturday, August 29th. Please join us by registering with this link: https://us06web.zoom.us/meeting/register/SzYr08zdSg6Npal7cZt66A

08/04/2026

We just received this from Phyllis Hirsch.

Dear Friends: it is with extreme sadness that I notify you of the passing of my dear husband, Jerry Hirsch. He gave it the good fight but unfortunately, his body refused to cooperate. He passed peacefully on July 17, 2026. He was laid to rest with US Air Force military honors.

Phyllis Martin-Hirsch

Jerry and Phyllis have been a big part of the LEMS community for many years. The LEMS Family Association mourns Jerry's passing and offers condolences to Phyllis and all the family.

https://pull-up-a-chair-lets.captivate.fm/listenWe talk with Tracy Sharp from Kentucky about his early experiences and s...
08/01/2026

https://pull-up-a-chair-lets.captivate.fm/listen

We talk with Tracy Sharp from Kentucky about his early experiences and struggles from his LEMS diagnosis. He also discusses adapting his life to this new reality, living with a neuromuscular disorder, and his work advocating for LEMS patients with doctors for the LEMS Family Association. He also talks about advice he gives when mentoring other patients, and his single most important tip to the newly diagnosed.

Quickly and easily listen and subscribe to Pull Up a Chair Let's Talk LEMS for free in your podcast app of choice.

Address

2860 S. State Highway 161, STE 132
Grand Prairie, TX
75052

Telephone

+18178833113

Website

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