Join Us in the New Muscular Dystrophy News Forums

Join Us in the New Muscular Dystrophy News Forums

I received my mitochondrial myopathy diagnosis 13 years ago. I became involved with the Muscular Dystrophy Association (MDA) soon afterward.

The organization is known for its Labor Day telethons previously hosted by the late actor and comedian Jerry Lewis. Each year, the telethon featured performances by actors, singers, comedians, and dancers to raise money for research into treatment for muscular dystrophy (MD), to provide families with medical equipment, and to send children with MD to summer camp. 

My journey with this amazing organization began at age 10, as soon as I got home from MDA summer camp. My mother had received a phone call asking if I would consider the role of national goodwill ambassador. My positive disposition and friendly personality hadn’t gone unnoticed during my time at camp. 

I don’t know if my family knew what an honor it was to be offered this once-in-a-lifetime opportunity; the position was not something to be taken lightly. The role entails attending MDA fundraisers across the country, meeting donor organizations, and being in the public eye. It requires long hours of travel, which did not suit my Mito lifestyle. I was aware of the demands the role would put on my body and my social life, so instead, I settled for the position of regional ambassador. 

I will never forget my experience as an ambassador. My outgoing personality helped me a lot with my duties — shaking hands with people at galas was a piece of cake. I sometimes attended fundraisers as the face of MDA. I did, however, feel nervous the first time I appeared on television at the telethon. 

My time as ambassador ended around age 12. The timing was right as my health was declining. I hadn’t been involved in the community since then, until almost two years ago, I received an email from Serena Lawrence offering me an opportunity to become a columnist for Muscular Dystrophy News Today. I said yes. Obviously.

I had never imagined in my wildest dreams that I would have a paying job, never mind a position I could do from home, that involved sharing my experiences with muscular dystrophy. Writing these columns has given me a purpose and a voice. By telling my stories, I am helping others who are going through similar experiences. I feel incredibly blessed each time someone comments on my column to tell me that they can relate to my challenges and encourage me to keep up the good work. 

I love being a columnist. The only downside for me was that I couldn’t reach out to people in the MD community directly. So, I was delighted recently to accept the position of co-moderator for the Muscular Dystrophy News Forums alongside Dani Liptak. 

Interacting with others who have the same disease can have many benefits. Finding a community to connect with and share experiences and advice is something that all of us need, whether or not we have disabilities. That’s why this forum was created. While we may not have the same medical needs or symptoms, we are connected by a common ground: our disease.

So, what are you waiting for? Become a member of the Muscular Dystrophy News Forums today and join in the discussions.

We would love to get to know you on your journey with muscular dystrophy. 

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Note: Muscular Dystrophy 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 another 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 Muscular Dystrophy News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to muscular dystrophy.

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2 comments

  1. Madhuri Chatterjee says:

    My son is 19 years old and suffers from DMD. we are from India. He is adept at writing and reaching out to people . His passion is wild life and bird watching. He is concerned about the climate change too. How can he be of any help in this kind of work , do let me know .

    • Leah Leilani says:

      Hi there Madhuri. Thank you for reading my article. Unfortunately, there are no more positions available for this job. If you own a laptop or computer your son may be able start his own personal blog and write on that.

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