Innovations in Care
MDA Resource Center
You don't have to navigate your neuromuscular disease journey alone – we’re here to help. The MDA Resource Center is available to provide one-on-one support via phone or email for individuals and families looking for information about the diseases in our program, services, activities and more.
How We Can Help
The Resource Center is your one-stop shop for information such as:
- How to join MDA
- MDA’s mission
- Clinical trials
- MDA Care Centers
- MDA ALS Care Centers
- Accessing MDA services
- Research advances
- Advocacy efforts
- MDA Summer Camp
- Diseases in MDA’s program
- The diagnostic process
- Family outreach opportunities
- Community resource referrals
- Volunteer opportunities
MDA Resource Coordinators are available Monday through Friday 8 a.m. to 5:30 p.m. CST and are typically able to answer all questions within 24 hours of a request on the next business day. If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA services are available only in the U.S.
Meet the Team
Our Resource Coordinators are the passionate individuals behind every phone call and email interaction with the MDA Resource Center. Get to know a bit about them, their connection to MDA and a few of their favorite things to do outside of work.
I’ve been honored to be with MDA since January 2008 after pursuing my degree in English from the University of Wisconsin – Whitewater. I have a condition called reflex sympathetic dystrophy, which affects my nerves, muscles, bones and vision. While this condition is not one covered by MDA, it allows me to truly empathize with the amazing families and individuals I get to work with every day. When I’m not working, I love getting to spend time with my husband and our 4-year-old daughter. We love traveling to our second home (Disney World!), having princess tea parties and singing off-key in our living room. We live in North Carolina and enjoy exploring all of the fun things our state has to offer! Read more about Mandy >
I have been working in healthcare for over 30 years in a variety of roles. I have worked clinically in cardiovascular medicine, held administrative roles in clinical and information technology arenas, and, most recently, managed a multidisciplinary team supporting data registries in the association setting. I have a Master's Degree in Health Services Administration. When not working, I enjoy spending time with my family, reading , and listening to music.
MDA has been a significant part of my story since I was a child. I was diagnosed with facioscapulohumeral muscular dystrophy (FSHD) at 7 years old and attended MDA Summer Camp in the Chicagoland area for 10 years. Thereafter, I pursued two degrees in English literature and creative writing, and a minor in film and television studies at the University of Arizona. Today, I am back in the great Windy City working for MDA’s National Resource Center. On any given day you can find me at a local museum, seeing a Broadway play or checking out a rooftop bar! (Pro tip: Buy your Broadway tickets from the standby queue for steeply discounted tickets the day-of!)
I have been involved with MDA since I was 9 years old when I was diagnosed with limb-girdle muscular dystrophy (LGMD). I was an MDA Goodwill Ambassador and also an MDA State Ambassador for the MDA of Iowa for many years. I had tons of fun at Summer Camp, where I met friends and learned that I wasn’t alone! After high school, I went on to pursue my bachelors in family services with a minor in psychology at the University of Northern Iowa. I live in Iowa, where I enjoy the “simple” life. I enjoy being outdoors, hanging out with friends and family, and I love the St. Louis Cardinals! Read more about Ashleigh >
I have been involved with MDA since I was 3 years old when I was diagnosed with Spinal Muscular Atrophy. I have always loved helping others and interacting with people. This passion of service lead me back to the MDA as I wanted to give back to an organization that helped my family and I, so much when I was younger. I give many thanks to MDA Summer Camp for helping me come out of my shell and making me the advocate I am today. MDA Summer Camp made me realize I could be independent and helped me find the courage to obtain my bachelors at the University of Illinois at Urbana Champaign and my Masters of Education at Loyola University Chicago. I love traveling and have gone to countries such as Costa Rica, Mexico, China, Taiwan, Italy, Ireland, Portugal and Spain. When at home I love to destress with a good book, game night, catching up with friends or going to a Broadway show. Read more about Hugo >
- MDA Care Centers
- MDA Resource Center
- MDA Summer Camp