MDA National Ambassadors Share the Everyday Impact of Neuromuscular Disease

10 yr old MDA Ambassador Ethan LyBrand and his family sitting on blanket outdoors

This blog originally appeared on the Muscular Dystrophy Association‘s blog, which can be found here. MDA is an organization that works to create hope for families affected by MDA, ALS, and other neuromuscular disorders by offering support for care and innovation. To learn more about MDA, the work they do, or how to get involved, please visit their website, or connect with them on Facebook, Instagram, Twitter, and YouTube.

In 1950, when the Muscular Dystrophy Association was founded, muscular dystrophy and neuromuscular disease weren’t well known or well understood. But they were, as today, affecting an entire community of kids and adults. And so in 1952, MDA made a move to introduce this community of individuals and families to the world.

MDA’s National Ambassador program began with a boy named Michael Danna. The idea was simple: Through poster campaigns and appearances, Michael could help share the story of how complicated diseases with unfamiliar names impacted everyday people, and how MDA offered hope.

Image of MDA Ambassadors
MDA’s 2019 National Ambassadors at the 2019 Clinical & Scientific Conference in Orlando.

“People don’t support organizations, people support people,” says Scott Wiebe, Training and Community Relations manager for MDA. “Neuromuscular disease is rare so it’s of utmost importance that we help raise awareness of it and help people better understand what it is. And the stories of the people we serve are so compelling. It’s compelling to hear the impact of rare disease, then to turn a corner and understand how these families feel supported by MDA.”

Today, MDA elects two ambassadors a year, each of whom serve two-year terms. While many National Ambassadors in MDA’s history were children during their terms, the organization now welcomes kids and adults to the program to best represent the diverse community impacted by muscular dystrophy, ALS, and related neuromuscular diseases. As representatives of MDA’s work and mission, National Ambassadors appear at local and national MDA events, including the annual Scientific & Clinical Conference, and throughout the year write letters to MDA supporters, share their stories in videos, and post about their stories on social media and MDA’s blog.

Most ambassadors already have a significant history with MDA before they come to the national stage.

“Sometimes they went to MDA Summer Camp as a kid and gained a lot of independence and learned self-advocacy and, years later, found that incredibly valuable,” Scott says. “Sometimes they had an extended, very frustrating diagnostic odyssey and then made it to an MDA Care Center where people truly understood their disease, and it was game-changing for them. There are different ways people engage with MDA to come into this space as a spokesperson.”

MDA’s 2020 National Ambassadors — Tana Zwart, beginning the second year of her term, and Ethan LyBrand, beginning his first year as a National Ambassador — each have unique stories, deep MDA ties, and eyes on a hopeful future for everyone in the neuromuscular disease community.

Tana’s first ambassador year

For Tana, a 35-year-old Sioux Falls, SD, resident living with facioscapulohumeral muscular dystrophy (FSHD), 2019 was full of videos, writing thank you notes, public speaking and appearances, and traveling.

“I knew going into the [MDA National Ambassador] role that meeting people was probably going to be my favorite part,” Tana says. “It was, hands down. I met so many people from all parts of the country. I’ve bImage of Tanaeen consistently blown away this year by how hard people go for this cause. Big-hearted, people-centric, truly phenomenal human beings. Just hearing their stories and what fuels their passion was incredible inspiration for me. I met so many families in particular who are facing their own personal struggles but are using it to create dialogue and bring about change. We need more of them.”

Tana joined MDA advocates to meet with politicians on Capitol Hill at the MDA Public Policy and Advocacy Conference in Washington, DC, and she helped sell raffle tickets at an MDA booth at the Sturgis Motorcycle Rally in Sturgis, SD. She’s also become more invested in representing the disability community in her hometown.

“Locally, I’m involved in different disability awareness committees,” Tana says. “Being ambassador has really opened up my eyes even more to the issues the disability community faces as a whole. How much louder and clearer our voices need to be. Equal rights and inclusion have come a long way, but we have work to do, and a lot of misconceptions to rearrange yet.”

Serving as an MDA National Ambassador has given her the confidence to do that work in a public forum.

“Interviewing and public speaking has been one particular thing I have wanted to get better at and more comfortable with,” Tana says. “This year has definitely helped prime those two things a little bit. Personally, I love a good challenge and the growth that comes from it. It definitely was a character-building year in the best way.”

Ethan gears up

Ethan LyBrand, a 10-year-old fifth-grader from Decatur, Ala., is looking forward to the responsibility that comes with ambassadorship; he’s already done a lot of growing with MDA beside him.

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Ethan LyBrand (left) with his mom, Jordan; his dad, Josh; and his little sister, Chloe.

As a baby, Ethan struggled to gain weight. His parents, mom Jordan and dad Josh, took him in to the doctor, and after a series of tests, two days before his second birthday, Ethan was diagnosed with Duchenne muscular dystrophy.

“Ethan was diagnosed in June of 2011 and we went to our local MDA office in July because we knew we wanted to get involved,” Josh and Jordan say. “We met with them about what we should do locally and how we could make a difference.”

Since then, the LyBrands started the annual Ethan LyBrand March at Delano Park in Decatur to benefit MDA. And MDA has made an impact on Ethan’s care and confidence.

“The access to MDA Care Centers is so beneficial,” Josh and Jordan say. “Having all the doctors in one place who are all involved with treating the disease is so important. And Summer Camp has been amazing for Ethan. We really give credit to Summer Camp for the way Ethan has handled several things, like getting a wheelchair, because he has seen [other kids who use wheelchairs] and been going to summer camp since he was old enough to attend.

“MDA has become like part of our family,” the LyBrands say. “As a parent, knowing that every day there are people fighting for your son and working every day to help find a cure is the best feeling in the whole world. MDA helps us feel like we are not alone in this journey.”

Today, Ethan uses a power chair (named Bumblebee, after his favorite Transformer) for long distances and at school, where his favorite subject is history. As much as he loves learning about the past, though, he’s also looking to the future.

“I hope to make other kids happy and I’m excited to go talk to people about having this disease and still living life to the fullest every day,” Ethan says. “[Kids with muscular dystrophy] cannot do as many things as kids without this disease, and it is harder for them to do things in general.  But at the end of the day, we are no different than all the other kids.”

Ethan hopes to help MDA work toward more treatments and cures, and more accessible air travel options — something he’ll need during his National Ambassador role, and beyond.

Accepting a national role to advocate for the community was an easy choice, Ethan says.

“It is a really good community,” Ethan says. “MDA helps kids like me so much by helping them with care and allowing them to go to camp, and overall they help anyone with muscular dystrophy have a better life.”

See more of Ethan and his family here.

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