Since the tender ago of five, Hugo Trevino, who has Spinal Muscular Atrophy (SMA), has been involved with MDA. From participating in MDA Summer Camp as a child to rallying behind causes like Fill the Boot and Muscle Walk, Hugo has always been dedicated to helping others live longer and grow stronger. Now, as a resource specialist for MDA’s National Resource Center, Hugo continues to help others, offering sound advice and a wealth of knowledge for families in hometowns across America, looking to learn more about muscular dystrophy.
From his favorite thing about being a resource specialist to what he likes to do in his spare time, here is more about MDA Walk Star, Hugo:
1. What do you most enjoy about being a resource specialist in MDA’s new Resource Center?
I love being the person families get to talk to when they are newly diagnosed. I love being able to disclose to families that I, too, have a muscle disease when they feel that their child will not have a “normal” life. Being able to share that I moved away for college, studied abroad three times in three different countries, and will be starting grad school soon, gives hope to the families that their child will also have a “normal” life.
2. What is the most common question(s) you are asked from individuals calling into the Resource Center?
What services do we offer?
Do we cover their disease?
Do we help with the cost of durable medical equipment, home accommodations and other medical expenses?
3. What do you find most inspiring about working for the Resource Center at MDA?
I love being able to give hope to families and helping them realize they are not alone. It is always nice being able to connect families to MDA Care Centers as most of the time they have only seen doctors who have never heard of their diagnosis. I also love teaching families about services that are already offered in their state and how to advocate and fight for the programs they need.
4. What has surprised you most in your position as a resource specialist at MDA?
How open families are about sharing their life stories. I feel like most families can’t help but be open as most of the time they have spoken to people who can’t relate to them or understand the journey they are about to embark on. It’s nice being able to connect on such a personal level and be able to tell them, “Yes, I’ve heard of that disease” and then follow with “I have friend with your diagnosis who I went to college with.” That always changes the tone of the conversation and the families are excited to hear stories and also be ready to live a life unlimited. I love being able to let families vent and give them that shoulder to cry on in order for them to gather themselves and be able to move forward after our call with the steps and suggestions we offered.
5. What are your favorite hobbies or activities outside of work?
I love going out to eat. I am the biggest foodie and love exploring the culinary world in Chicago. I also love hanging out with friends and watching movies at the theater with a huge bag of popcorn. I enjoy zoning out with a good book and nice glass of Pinot Noir.
6. What is the best piece of advice you have ever received?
To take the time to take things in. It is okay not to know the answer. Take a step back and then try to see what solutions you might not have explored before and make sure you always keep the best interest of the client in mind when giving them solutions.
7. If you could summarize your position as a resource specialist in three to five words, what would they be?
Supportive. Reliable. Crafty.
8. How do you live unlimited?
I know I cannot do everything the way everyone else can. As soon as you accept that it’s okay that you will need things modified, the world becomes more accessible. Accepting your abilities and inabilities is key to living unlimited and having a positive attitude, which helps attract more positive people/things to your life. Just because something isn’t accessible at first doesn’t mean it can’t be changed down the road.
Are you a family with neuromuscular disease looking for one-on-one support? Give our new Resource Center a call at 1-833-ASK-MDA1 (1-833-275-6321) or email firstname.lastname@example.org.