Community Interview: Mindy Kim, Community Outreach Specialist

In June 2023, By MDF’s Health Resources Coordinator, Ruth Sheldon, MSW, MPH, sat down with Support Group Facilitator & Community Outreach Specialist, Mindy Kim, to learn more about her story! 

Since her myotonic dystrophy (DM) diagnosis in 2010, Mindy has been very active in the DM community. Her current roles include Support Group Facilitator for North & South Carolina and Supportive Facebook Chat Facilitator. Despite her already significant involvement in the DM community, Mindy Kim has decided that she has the capacity to do even more!

At age three, Mindy began dancing. Mindy’s mother enrolled her in a toddler tap and ballet combination class and changed everything. This sparked a lifelong passion for the art form that has sustained into adulthood. Mindy “fell in love” with tap, and continued dancing many more styles including jazz, ballet, swing, ballroom, line dancing, salsa, and hip hop throughout, and following, her time in college. She even met her husband swing dancing!

Mindy began teaching dance while living in Foster City, California, but continued teaching in many different regions. She taught out of community recreation centers in California, Texas, and eventually Greensboro, North Carolina, where she currently lives with her husband and son. Following her diagnosis in 2010, Mindy began adding Chair Tap to the classes she offered. One day when Mindy had been journaling, she realized that she had been tapping her feet the entire time she was writing. It occurred to her that a modified version could allow her to keep dancing, even as her body lost mobility. As time passed, Mindy decreased the amount of children’s classes she taught and increased the amount of Chair Tap classes she taught at the Senior Center.

Although Mindy shared that her “teaching days are over”, she has kept busy through her engagement with the DM community. Because Mindy pursued dance professionally, her DM diagnosis was particularly impactful. At the time of Mindy’s diagnosis, there were no support groups in Texas. So, with the assistance of the Muscular Dystrophy Association, Mindy started one. After moving to North Carolina, Mindy began another support group for MDF, engaged with Facebook chats, and during COVID even started an online Happy Hour. She said that these friends “help and support her just as much as [she] sought to help them”.

The Myotonic Dystrophy Foundation warmly welcomes Mindy to a new role in community outreach! A familiar face to the community, Mindy will be engaging the community in an effort to boost participation in the Myotonic Dystrophy Family Registry. Mindy will contact individuals to encourage them to update their registry information, if they have not already done so, to ensure the most accurate information is available regarding symptoms and quality of life. The Myotonic Dystrophy Family Registry is an incredible collection of safely stored and protected data about individuals with DM. The registry consolidates this health information (symptoms, diagnoses, surgical history, etc.) in a database that can help researchers, physicians, and other medical professionals learn more about myotonic dystrophy. The more data input, the more information professionals have to utilize in the mission of finding care and a cure for DM.

Mindy wears many hats now, all of which we are incredibly grateful for. Mindy said it best:

“I am so thrilled to now be a part of the MDF team! My particular role as outreach specialist for the registry is the perfect opportunity for me to continue to engage with our community and help by getting them on the family registry, as well as give them information about DM clinical trial and study opportunities they otherwise might have missed.”

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