Raising Rare Disease Awareness by Design
By Rebecca Hume | Thursday, January 25, 2024
Increased awareness, the dedication of advocates, and innovations in research have brought progress to the treatment landscape of rare disease. Matt Plummer, who lives with spinal muscular atrophy (SMA) type 3, finds hope and empowerment in that progress. The 36-year-old Creative Director and Brand Manager at The University of Texas Permian Basin has a strong personal passion for contributing to the advancement of rare disease awareness and treatments.
“Spreading awareness about rare disease is incredibly important because there can never be enough voices having the conversation about what we can do better for people living with these diseases,” Matt says. “Whether this is through fundraising, research, advocacy, or other endeavors, it is important to continue to build our community and strengthen our voices so that more people take action to improve the future for those living with a rare disease.”
Matt’s journey as an advocate began when he first connected with the Muscular Dystrophy Association (MDA) through his MDA Care Center as a pediatric patient. From there, he and his family volunteered at the annual MDA telethon in Dallas, joined other MDA fundraising efforts within their community, and found joy in the opportunity to give back to an organization that provided valuable support and resources as he navigated life and independence living with SMA.
As a current member of the MDA Board of Directors, Matt continues to dedicate his time and voice to MDA’s mission. “It means the world to me to have the opportunity to share my voice, and the voice of others like me, when navigating challenges, celebrating successes, and shaping the future of the MDA,” Matt says. This year, he has also been offered a unique opportunity to contribute not only his voice, but his artistic design talents, as the designer of this year’s official T-shirt for the iconic MDA Shamrocks campaign.
Overcoming barriers and celebrating successes
When Matt was originally diagnosed with SMA, his parents were told that he would never lead a “normal” life. Doctors informed his parents that they should not expect him to graduate high school, obtain a college degree, have a career, or have his own family. Refusing to accept the limitations that others imposed on him, Matt’s parents viewed this prognosis as one of many challenges that they believed Matt was capable of overcoming.
“They pushed me throughout my life to live as much of a normal life as I possibly could,” Matt says. “I graduated high school, went to college, went to graduate school, got married, have a great career, and now have a four-year-old daughter. I used to be embarrassed about my limitations and tried my best to hide them. But, as I grew up, I started to accept myself for who I was and for what I could and could not do.”
Having faced many obstacles in his life, from general accessibility issues to personal mental health concerns, Matt shares that there is no shortage of challenges to overcome while living with a neuromuscular disease. But through resources, accessibility devices, and the support of his family, he has also found that there are always avenues to overcome anything that stands in the way of his goals – and that overcoming those obstacles have made him a stronger person.
“No matter the barrier or the obstacle, I know that if it is something I cannot overcome by myself that I have an incredible family and community to lean on,” Matt says. “With their help, and their strength, I know that there is nothing that I cannot overcome. I’m incredibly lucky to have a great support system around me that keeps me going every single day. But I also think that having a rare disease has made me stronger. I know that without it, I wouldn’t be the person I am today. And I appreciate the challenges and barriers creating a stronger person in the end.”
Celebrating that strength and the many successes he has had on his personal and professional journey, Matt has found his niche in graphic design, a role that he says provides him freedom and expression without limitations.
A career in graphic design
Matt first became involved in design while participating in a theater program in college. When the theater program needed someone to design posters and marketing materials for upcoming productions, Matt volunteered and quickly found that he had a passion and talent for the creativity of design. He began designing posters for productions for the theater department at Texas A&M University-Commerce and started working on campus in the print shop, designing posters, brochures, flyers, and other items for the community and University. Expanding into freelance work for friends and local businesses, Matt soon found his calling as a full-fledged graphic designer. Upon graduating from Texas Tech University, he accepted a position as a graphic designer at a local community college, and has been working in marketing and design ever since. Now serving as the Creative Director and Brand Manager at The University of Texas Permian Basin, Matt continues to navigate life with a disability while excelling in his chosen career.
“The professional world can be intimidating, especially with a disability. I frequently found myself wondering when I should bring up that I am in a wheelchair when applying for jobs and in the interview process,” Matt shares. “I’ve been successful in the workplace by being open and honest with myself and others about my disability and limitations. I have found that in the right place and in the right position, everyone is open and willing to help, no matter what your situation might be.”
When it comes to accommodations as a professional, Matt says that there is often a challenging balance to navigate between thinking that you are asking for too much but also ensuring that you have the tools you need to be successful. Being open and honest about accommodation needs and recognizing that employers want you to be able to do your best work, with whatever tools that requires, can help ensure that your needs are met. Matt uses accessible computer equipment and software and works remotely from home. Working out of his home allows Matt more independence and freedom, with access to his own equipment and accessibility features, so that he is well equipped to bring his passion and creative designs to life without barriers.
“My favorite thing about design and creating overall is that it gives me a freedom of expression that I otherwise don’t have,” Matt says. “I definitely have physical limitations, but when it comes to design, I feel like I have no limitations at all. I am able to bring to life my imagination and thoughts and create something that otherwise wouldn’t have existed.”
Matt has also found that, in some ways, living with a disability has provided him with additional tools to developing his talents and finding success in graphic design. “If anything, my disability enhances my work because I am able to see things a little differently than everyone else.,” he says. “I personally believe that design is 50% creativity and 50% problem solving. As a person living with a disability, I utilize problem-solving in every instance of my life. I have to think 5 steps ahead of everyone else and my environment to ensure that I can access what I need and overcome any obstacle. This is an incredible advantage to have in the world of design and creativity.”
Creativity for a cause
Having the opportunity to utilize his skills and creative talents to support the 2024 MDA Shamrocks campaign is incredibly meaningful to Matt. The iconic MDA Shamrocks pinup program is one of the nation’s largest St. Patrick’s Day fundraisers. In it’s 42nd year, what started as a small fundraiser in a local pub has grown to include thousands of retail locations nationwide and has raised more than $346 million to support MDA’s mission.
“The Shamrocks campaign is important to me because it’s something that is essential to the success of the organization and our families,” Matt says. “To be part of that by providing this design is something that I’m truly proud of.”
To develop this year’s Shamrocks T-shirt design, Matt took a look at previous designs in an effort to find a way to integrate the iconic nature of both the shamrock and the organization. His goal was to create a fun and universal design that could speak to the current generation of MDA families while honoring the legacy of the campaign. Matt’s typical creative process when creating a design involves developing multiple concepts, usually including a safe concept, a “far out there” concept, and a middle of the road type concept. Sharing those concepts with the team at MDA helped Matt to better understand what the organization was looking for and allowed him to hone in on which areas to build upon and which areas to scale back from in order to develop his final product.
“It was a great process working with MDA on this design because they allowed me to explore some different styles and really utilize my creativity in tandem with their brand in order to create something that was really special for both of us,” Matt says.
And creating a design that contributes to the progress of treatments for rare diseases is unmeasurably special to Matt. “Because of increased awareness and advocacy for rare diseases, there are more treatments than ever available to people like me,” he says. “Even just 5 to 10 years ago it seemed impossible that we would have treatment opportunities for SMA and other neuromuscular diseases. Because of MDA’s efforts and advocacy, we are now in an era where more treatments are available than ever. As a father, it’s more important to me than ever to be as healthy and strong as possible. These efforts to expand research and provide treatments help me realize that dream and realize how important every single day is.”
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