By MDF’s Health Resources Coordinator, Ruth Sheldon, MSW, MPH
The Myotonic Dystrophy Foundation (MDF) is pleased to introduce our new office volunteer, Elias Trevino!
It is impactful to hear stories about individuals who decide to volunteer at the Myotonic Dystrophy Foundation (MDF) regardless of a personal experience with myotonic dystrophy (DM). As a person living with DM, I find it particularly moving to know that there are people working for the community because they see a need, as well as how they might address it. Elias Trevino is one such incredible volunteer. He does not have DM, nor is he a caregiver of a person living with DM. Instead, Elias got involved with MDF through professional connections. After decades of work in the chronic disease nonprofit space as a Vice President of Operations, and having volunteered at numerous charity organizations during his life, he brings a tremendous skill set to help move MDF’s mission forward. Having previously been a colleague of MDF’s CEO, Dr. Tanya Stevenson, a few months ago Elias sought out volunteer opportunities at MDF to help support his healing following a traumatic brain injury (TBI).
Two years ago, Elias fell from an office chair during work and hit his head. Elias was quickly taken to the hospital to be assessed. Finding nothing harmful the matter with Elias, physicians sent him home. The next morning, Elias knew something was wrong when he awoke with blurred vision, memory problems, and dizziness. Returning to the hospital, Elias was told that he had a blood clot in his brain the size of a fist, and he was rushed into emergency surgery. Nothing would ever be the same.
This experience resulted in lasting changes to Elias’s life. He has had to re-learn many things and alter the way he navigates life. He described to me the ways his life is impacted by a TBI. It comes as no surprise that there are many changes; “there is a lot of anxiety and frustration and discouragement” that comes from re-learning how to live. Because the brain is responsible for so many bodily functions, many body systems are affected. As we continued talking, I was surprised to see so many similarities between Elias’s life with a TBI, and my own life with DM1. It was incredibly life affirming for me to see, despite our drastically different life experiences, how sympathetic Elias was to my experience. His engaging curiosity and vast experience in the nonprofit sector make Elias an excellent volunteer – equally capable of having an impassioned conversation about health one minute, then updating the mailing list another.
Elias has been working at the MDF office once a week for the last few months, assisting the team with various office tasks and keeping the office organized. MDF and the DM community benefit from all the work that Elias does to keep things running smoothly. Similarly, I hope we at MDF can give Elias comfort and confidence as he navigates activities of daily life with new perspectives.
Before we ended our conversation, I asked Elias what it was that kept him going. As a person living with any chronic health condition knows, it can be a challenge to stay positive and draw from our reserves of resilience. So, I often ask people about motivators. It did not surprise me when Elias answered by saying the feeling he gets from volunteering is one that encourages him on tough days; “sometimes I struggle to look at every day with love, but helping others makes me feel good”. The last motivator that Elias mentioned was adopting a dog. Though he stated that it wasn’t the right time currently, the thought of welcoming a new furry friend into his life made his voice light up.
We are incredibly grateful to Elias for becoming involved at MDF, and we wish him the absolute best! We will be the first to celebrate when you adopt a new pup!