2023 in Review: A Letter from MDA President and CEO, Dr. Wood

Hello MDA Families and Friends,

As we reflect on the closing of 2023, our hearts are filled with immense pride, gratitude, and a deep sense of connection with each of you. This year has been a journey marked by resilience, innovation, and a collective commitment to improving the lives of children and adults living with neuromuscular diseases. Your strength, courage, and resolute spirit have been the driving force behind every milestone we’ve achieved.

In 2023, the FDA approved six groundbreaking treatments, a testament to the progress made in the field through a multitude of MDA research grants to the best and brightest scientific minds in the field. Every one of these treatments represents a truly historic breakthrough. Some, like gene therapy for Duchenne muscular dystrophy – the most common form of the disease – are the first of their kind in medical history. Indeed, MDA’s leadership in the field of genetic medicine has begun helping so many people that we established the nation’s first MDA Gene Therapy Support Network, to help people living with genetic disorders navigate the complex process of getting gene therapy or entering a clinical trial.

Our advocacy efforts also reached new heights when we were invited to the White House this year by President Biden and members of his staff, to speak with Vice President Harris and Secretary of Transportation, Pete Buttigieg among others, where we championed the needs of our community. We also went to the Capitol during our “Hill Day” where your voices, stories, advocacy, and letter writing campaigns have been instrumental in fostering understanding and bringing about positive change. One of these changes, based on a video MDA made showing the trials and tribulations of airline travel for people using wheelchairs, was the recent commitment by the Transportation Security Administration’s (TSA) to a training program for all TSA employees. TSA says it wants to ensure sensitivity in security screenings for travelers with neuromuscular diseases and other disabilities affecting mobility. Your dedication to accessible air travel, newborn screening, and other essential rights reflects the growing recognition of neuromuscular diseases and the urgency of our shared mission.

The cherished tradition of MDA Summer Camp once again provided transformative experiences for our young campers, creating moments of joy, laughter, and personal growth. We know the profound impact of camp and our other recreation programs on young people seeking community, independence, and a space where they can play and be kids in a fully adaptive environment. Relationships and experiential learning from camp and our family getaways endure long after the campfires are extinguished for the season.

You can find more detail about our productive year in the 2023 Year End report.

None of our achievements would be possible without the unique strength and tenacity that you bring to our community and to our mission. Your spirit and determination inspire us daily, and we are committed to continuing our work to generate research, multidisciplinary care, policy impact, and community-building that brings real and lasting benefit to every person living with a neuromuscular disease.

As we turn the page to a new year, let’s carry forward the spirit of unity, determination, and progress that defines our community. Together, we are making a profound difference in the lives of people with neuromuscular diseases, and we are filled with hope for the future.

Wishing you and your loved ones a joyful, peaceful holiday season filled with meaningful moments.

Sincerely,

Donald S. Wood, PhD, President and CEO, Muscular Dystrophy Association