Annual MDA conference prompts solidarity, gratitude, and hope
Patients, researchers, and caregivers gathered to offer support and learn
I have trained myself to look for the good in situations throughout my adult life. It’s not always easy.
When my daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS), I never thought I’d see good come from it. However, in time, good things have happened directly because of Grace’s diagnosis.
Last week, Grace and I had the opportunity to attend this year’s MDA Clinical and Scientific Conference in Orlando, Florida. We were there representing the LEMS community with a new LEMS nonprofit called The Lambert-Eaton LEMS Family Association.
This is our second year attending the MDA Conference. The conference’s goal is to bring together leading researchers, clinicians, and industry professionals to share the latest findings in research and treatment options for muscular dystrophy and other neuromuscular diseases.
Love, hard work, and dedication
This conference holds a special place in my heart. First, it is incredible to see so many people pouring their time, effort, and resources into the rare disease community. It makes me realize the potential we have to see new treatments and even a cure within my daughter’s lifetime.
Although there are no additional treatments yet, the potential is there!
However, the most valuable aspect of attending this conference has been the opportunity to meet other LEMS patients. When Grace was diagnosed four years ago, at the age of 15, I felt so alone. We’d never heard of LEMS, and we certainly didn’t know anyone who had it. I was desperate to see with my own eyes what LEMS looked like in other people. This conference gave us the opportunity to do just that.
By attending these conferences, we’ve met two other people with LEMS. It has been an honor to get to know them and hear their stories. As a mom, I value the opportunity to have other people share positivity and wisdom with my daughter. Both of these people have done that beautifully.
One of the biggest takeaways from this year’s conference was a renewed appreciation for the medication and other treatments that help curb LEMS symptoms.
I had many conversations with people representing other rare diseases as well. Most were surprised when I told them that our community has medication approved for LEMS by the U.S. Food and Drug Administration. They expressed hope that one day their rare disease would get an approved medication, too.
Until then, they wait.
The MDA Clinical and Scientific Conference has helped me connect with the larger community of LEMS patients and the rare disease world. I am grateful for everyone involved. I saw firsthand their commitment, passion, and hard work on our behalf. It is truly a beautiful thing.
Did you attend this year’s conference? If so, I’d love to hear from you in the comments below.
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 myasthenia syndrome.
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