How MDA Summer Camp Influenced the Direction of My Life

Bio: Rebecca Hume is a Senior Specialist Writer for Quest Media. She graduated from Slippery Rock University and worked in the Pennsylvania Medicaid Waiver Program for more than 10 years before coming to MDA. Rebecca was an MDA Care & Clinical Services Specialist and MDA Camp Director prior to accepting her role as a Quest Writer. She lives in Bethlehem, Pennsylvania with her four-year-old son. 

The first time that I learned about MDA Summer Camp was in the mid-1990s. My mother was working for MDA at the time and spent a week away from our family to direct a camp session. As my father navigated managing a household with three kids, my mom was managing magic for dozens of kids. When she came home, exhausted but filled with excitement and stories of an amazing seven days, I was intrigued.

MDA Summer Camp provides a week of accessible and empowering activities for youth living with neuromuscular disease. For many campers, it is their first time away from their parents and also their first time in an environment created entirely for them. The sleepaway camp is made possible by the dedication of volunteer camp counselors who facilitate activities, provide supervision and hands-on care for campers, and create a safe, exciting, accepting, and magical atmosphere. As someone who had attended and loved church sleepaway camps myself, learning about MDA Summer Camp was the first time I realized that the world is full of barriers for those living with disabilities – and how easy it was as an able-bodied person to take accessibility for granted.

My mom shared stories of campers gaining confidence, making friendships, trying new activities, laughing on stage at the end-of-week talent show, and simply finding freedom in being a kid at camp. She showed me photos of camp volunteers and campers playing sports, swimming, fishing, doing art projects, dancing, and bonding. All of the photos exuded pure joy.

I can clearly recall having two very distinct thoughts: One, directing a summer camp (especially an accessible one) sounds like the coolest job in the world. And two, volunteers can really make a meaningful and tangible impact on the lives of others.

Impact through volunteering

Rebecca (sitting at table in white shirt) volunteering at the MDA Telethon in 1998.

After catching a second-hand sense of the magic and power that MDA creates for the neuromuscular disease community, I was eager to get involved. I volunteered at the MDA Telethon, staying up all night in a hotel ballroom answering phones to accept donations. I helped my mom with the local MDA Christmas parties, celebrating with the families in our area and getting to know the kids living with NMD. I attended Ride for Life events, reveling in the energy and beautiful dichotomy of tough-looking Harley Davidson motorcyclists forging easy and joyful friendships with the excited kids who attended and waved from sidecars in the parade.

The opportunity to volunteer with MDA opened my eyes to both the incredible impact we can have on others and to the need for and value of that impact. It made me realize that I could use my gifts and my talents to make a difference – and that I could choose a career that would allow me to do so by serving others. MDA Summer Camp first ignited my love for volunteering and for serving the neuromuscular disease community; more than twenty years later, I would find myself directing a session of MDA Summer Camp at Happiness is Camping in New Jersey.

My journey to MDA Summer Camp

After volunteering at a variety of events in middle and high school, I attended Slippery Rock University to pursue a degree in social work. I wasn’t entirely certain what path I wanted to take, but I knew that I wanted to work with the disability community. My first job after college was as a Service Coordinator for the PA Medicaid Waiver Program, coordinating Home and Community Based Services (HCBS) for adults living with disabilities. (At that time, my mom was the Director of the HCBS Department at the agency where I started working. It would be the first, but not the last, time that I followed her footsteps.)

Rebecca and her Camp Co-director Alyssa at Happiness is Camping in 2019

I worked in the Waiver Program for more than ten years, changing agencies and advancing to a supervisor role. During that time, I served people living with a wide variety of diagnoses but constantly felt myself pulled towards serving those participants with muscular dystrophy, SMA, and ALS. I studied neuromuscular diseases to gain a better understanding of their progression and the needs within the community. I sat with families who were navigating a new ALS diagnosis and those who were navigating the final stages of the disease. I pursued approval for home modifications and personal attendant hours to increase safety and accessibility at home for young adults whose MD had progressed and changed their needs. I prioritized truly connecting with families to offer not just services and resources but also understanding and advocacy. And I found that serving the neuromuscular disease community was my calling.

Opting to follow in my mother’s footsteps for the second time, I accepted a position at MDA as a Clinical Care Specialist and MDA Summer Camp Director.

The best job in the world

While I have now had the privilege of writing and editing for Quest Media for the last five years, my initial role and the opportunity to direct summer camp hold a special place in my heart. I attended camp in 2018 as support staff to the director and co-directed a full week of camp in 2019. It was one of the most incredible, moving, magical, unexplainable, humbling, and motivating weeks of my life.

The magic of summer camp is two-fold – and unless you have been there, it is challenging to put into words. On one hand, witnessing youth living with NMD dropping the burdens of living in a world that wasn’t designed for them and diving into a full week of new experiences, independence, and genuine, carefree fun and friendship – and having the privilege to play a role in creating that opportunity – brings an indescribable feeling of joy and gratitude. Connecting with the campers, learning their stories and interests, sharing laughter and excitement, and glimpsing their incredible gifts and perspectives is something that I wish that every human being could experience.

Campers, volunteers, and staff at Happiness is Camping MDA Summer Camp 2019.

Which leads to the other hand: the volunteer experience. Guiding and supervising the amazing volunteers who make camp possible and witnessing them experience those incredible moments and connections is extremely satisfying, both professionally and emotionally. There is not a single person who volunteers at MDA Summer Camp and does not leave slightly changed for the better. A better understanding of life with a disability, a better appreciation for their own gifts and blessings, a deeper passion for others, and a motivation to continue to serve.

Instilling a spirit of service and acceptance in the next generation

I consider myself lucky to have parents who motivated me to volunteer and serve others at a young age. It is a true gift to instill a heart of service in our children. As a mother now myself, I have the deep desire to teach my son not only to love others, but to love serving others. My mother’s role at MDA bolstered that love in my heart after her first week of magic in 1994.

It wouldn’t be until years later, in an Americans with Disabilities course in college, that I would come to realize that my mother also instilled in me a very important and less obvious ideology – one that I hadn’t realized until then that not everyone in our society carries innately. She modeled for me that all people, with or without disabilities, deserve not only access and opportunity but also joy, adventure, love, friendships, empowerment, acceptance, and every other beautiful thing that life has to offer.

I am blessed to have carried that ideology as an easy and natural truth my entire life. And I am motivated by the desire to make an impact on an often ableist world that has not yet caught up – and to teach my own son the same truths and the power of serving others.