MDA Ambassador Guest Blog: My Volunteer Journey

MDA Ambassador Amy Curran

MDA Ambassador Amy Curran lives with GNE Myopathy. She resides in the suburbs of Philadelphia, Pennsylvania with her partner, Jon, and her dog, Lexi. She holds a bachelor’s degree in biology and master’s degree in education. Amy currently volunteers as an Ambassador for the MDA and a Patient Advocate Program Manager for the Neuromuscular Disease Foundation.  In her spare time, she enjoys spending time with her family, acrylic painting, photography, and jewelry making.

My journey as a volunteer through the years

When you think of a volunteer, you may not immediately think of a 16-year-old teenage girl, but that’s where my volunteering started.  I joined my local fire company as a junior firefighter. I was ecstatic and ready for the challenge.  My parents needed a little more convincing, but they found a community of people willing to teach me on my way to becoming a senior firefighter at 18.  I went to weekly fire practices, monthly meetings, and went on fire calls.  Local volunteer firefighters don’t just answer calls for fires and fire alarms; we answer calls for car accidents, suspicious smells, helicopter landings/take offs, flooding, active missing persons, etc.  The work we were doing was important to us and to our community. At age 21, I resigned from our local company when my family moved out of the area.  During my time as a firefighter, I was a part of a community, a community of people who wanted to help protect our borough. We came from all walks of life, but we all had the fire house.

In college, I signed up to participate in Habitat for Humanity over spring break during my sophomore year of college.  We fundraised during the fall semester and beginning of the spring semester to pay for the groups’ trip.  We flew to Fort Lauderdale and stayed in a state park cabin for the week cooking our own meals.  At the Habitat for Humanity site, we met up with other volunteers and were assigned different jobs related to building houses each day.  I loved every moment of that spring break from having no hot water in the state park to the supervisors handing you a power drill, telling you what to do, and trusting you.  For that week, I felt part of something bigger than me, bigger than my small world, and it was invigorating and humbling at the same time.

Amy Curran with other Habitat for Humanity volunteers

Later, as a teacher, it was important to me that I show my students I was invested in them and their community. I attended evening events on my own time such as talent shows and concerts.  My colleague and I started an after-school homework club that any student could attend. During my time as a teacher, my symptoms of GNE Myopathy progressed and I, ultimately, retired on disability.

Now, I choose to volunteer as an MD Ambassador simply because I want to, and because I believe it is vital work.  Being diagnosed with an adult-onset neuromuscular disease has truly led to this point in my life where I can say utilizing my time spreading awareness, advocating for neuromuscular diseases, and sharing resources for people with neuromuscular diseases has become my purpose.

In my role as an ambassador, I hope to cultivate relationships with other members of the neuromuscular disease community through our shared experiences, and help bring people together to further encourage and strengthen our community.  It is important to me that anyone and everyone who comes to the MDA leaves with the amazing realization that my family once had: we are not alone.  Finding out there is a whole community of support in the MDA can be a real game changer for many families and I want to keep advocating for this important support that helped my family at the critical time of finally receiving a correct diagnosis after many years.

Amy Curran and her partner, Jon, at an MDA event.

As an MDA Ambassador, I attend monthly virtual meetings and share my input and/or experience during these meetings. If we are available, we volunteer to attend different opportunities, whether these be virtual or in-person, to show our support for the MDA in our own area.  One of my favorite events to volunteer for was thanking the shamrock campaign participants. I went around to local businesses and thanked the managers and/or owners personally for participating in the shamrocks campaign.  The overwhelmingly positive response from the businesses made the trip around the area worth it a thousand times over.

Serving as an MDA Ambassador has also made a difference in my life.  I feel like I am helping to support and improve the community resources that I and others have used and will continue to use. Those feelings have increased the joy and hope in my life. As I work with others, I continue to learn and grow towards a better understanding of the neuromuscular disease community.  We must listen, empathize, and learn, and then strive for a better future.

For anyone thinking about becoming an MDA Ambassador, I would say go for it.  Don’t underestimate your value because everyone, and I mean everyone can contribute.  You will find a group of warm, welcoming people with a common goal of reaching across America to help their MDA community.