A Monument of Pearls

BY BELINDA MILLER
MANASSAS, VIRGINIA

The United States contains some of the most magnificent monuments in the world, both natural and human-made. But few compare to the state of South Dakota’s Mount Rushmore – the massive granite crag sculpted to honor some of our most iconic leaders. A lesser-known South Dakotan, but equally impressive, is Tana Zwart, a member of the FSHD Society and the second adult to serve as a Muscular Dystrophy Association (MDA) national ambassador.

Tana lives in Sioux Falls, South Dakota. Because of her unrelenting volunteer work for the MDA, raising awareness and funds to aid research for finding a cure for FSHD, Tana was honored with an MDA ambassadorship in 2019.

Originally from Minnesota, Tana was diagnosed with FSHD at the age of seven and, like most patients, her diagnosis took time, especially because she is “de novo” – she did not inherit the gene from a family member. Tana and her family worked at turning a negative situation into something positive. They became passionate about working through the MDA, participating in local fundraisers and telethons, and even taking part in the famous annual Sturgis Motorcycle Rally.

In 2012, Tana was crowned Ms. Wheelchair Minnesota, and she competed for the national title, where she gained recognition receiving the Press Room and Most Photogenic awards. Because of her unwavering volunteerism, she won the MDA’s Spirit Award.

For Tana, life has not always been filled with awards and honors. Since her childhood diagnosis, she has had to adapt to the weaknesses in her body from a young age. Although very active as a child, she began to feel the effects of FSHD by the fifth grade. Today, at age 34, she has been wheelchair dependent for half of her life. She has lost her ability to walk, but Tana perceives her wheelchair as an extension of her body.

Definitely a woman of conviction, Tana has not put aside her dreams. She has a strong interest in the fashion field and would like an opportunity to use her ideas in the industry, being involved in its movement of inclusivity to “embrace all bodies.” “Fashion is all about uniqueness and individuality,” says Tana. “It’s about time it started embracing a demographic defined by its physically unique individuals.”

Tana will not allow FSHD to define her. Her strength and perseverance have brought her to where she is – the second-ever adult ambassador for the MDA. But her goals do not end there. She sees owning a home, getting married, and writing a book as part of her future.

This young woman does not look at her abilities through rose-colored glasses. “Life with FSHD is hard and unfair,” she says. “It’s not something I like to readily admit, but it is a truth. For me the reward has always been 10 times greater than the struggle, though. I think that’s what pushes me, and what gets me through the harder days. No grit, no pearl, right?”

One thing is for sure: Tana has enough grit to build a monument of precious pearls.

Does Tana’s story inspire you to take action yourself? Visit TeamFSHD and our National Chapter Program to learn how you can make a difference.