2015 MDF Conference Experience

#myotonicmemoriesThere are moments in our life that change everything, when we lose somebody, when we marry, when we have children, when we learn of a diagnosis.  Even small things can change or alter the course our lives take, like a book or video that moves you to take action in some way or the plight of a friend that makes you learn about something new, even something as simple as a smile or handshake from someone you admire can change everything.

I have had many of these life altering moments and one of them I get to repeat every year, that is attending the MDF annual conference.  In 2010 I was diagnosed with Myotonic Muscular Dystrophy type 1.  In 2013 I went to my very first MDF conference in Houston, TX.  It changed my life forever!  I met amazing people who were just like me and could really understand me; I met face to face friends I had previously only met online.  I learned more about this disease than I could ever imagine (not being a doctor). I left the end of that weekend feeling enlightened, empowered, understood, educated, loved and inspired.  I came home with a new sense of purpose and a new direction and an entire community of people behind me!  My life was changed forever and for the better.

I’ve been to the conference every year since and they never disappoint.  This year the major difference was those friendships and connections. I feel like all of us in our FB group and those of us who are conference regulars all became a bit closer this year and through “my people” I met amazing new people who have become, in an instant new super close friends. As empowering as the knowledge and advocacy and research and everything offered at a conference is, nothing is more powerful or impactful as connections with people who know your fight, with people who know your heart and with people who remind you that you are not alone, and never alone.

I have been inspired this year to do a few new things – I have some ideas to fundraise for the MDF.  I have some ideas of ways to make my support group better and stronger.  I have a feeling of love and support that I cannot describe in words, it is a different than what I feel with my family, my husband my super close long life friends who don’t share this disease. It is something on a whole new level.  It is a feeling beyond happiness or even bliss beyond love beyond …anything I know.  This is a feeling everyone in life should be able to experience I have found a pathway to… a great place.

My greatest wish and hope and prayer is that everyone who has DM – in any form, comes to the next MDF conference (any MDF conference).  The change that will occur in your heart and soul is immeasurable and well worth the little bit of money, travel and commitment it might require.  Make that choice, be there next year, I can promise you won’t regret it.

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