Insights by Ira: Mission Complete

Just four days prior to my inaugural public engagement as National Ambassador in 2024, I began  not feeling well. Confronted with this situation, I was faced with two options: notify my MDA contact regarding my potential absence from the highly anticipated event or adhere to my established practice of persevering through challenges in order to fulfill my commitments. Those familiar with me won’t be surprised that I chose the latter. Adversity has consistently served as a source of motivation and growth throughout my life and I have always found power in sharing my story and helping others. It is for these reasons that I accepted the position of National Ambassador for the past two years—believing that sharing my journey with neuromuscular disease could offer value, support, and hope to others navigating similar paths.

As this is my final article in the capacity of a National Ambassador, I would like to take this opportunity to reflect on these two impactful years marked by advocacy, leadership, encouragement, and resilience. I wish to acknowledge the successes realized, express gratitude for the experiences gained, and articulate optimism for the future of the neuromuscular community.

Achieving my goals as a National Ambassador

When I was offered the opportunity to fulfill the role of National Ambassador, I took some time to define a mission for this role. My goal became clear: to encourage, inspire, and uplift others. I wanted to demonstrate courage and champion for those living with neuromuscular diseases as they pursue independence, fulfillment, and their best selves. I aimed to lead passionately within the MDA community, raising awareness, advocating strongly, and supporting medical research funding. My hope was to serve as an example, showing people that it’s possible to achieve greatness, happiness, excitement, and live a life full of love and compassion, even while facing health challenges.

After two years on the national stage, I believe that I have fulfilled my mission. Through numerous speeches celebrating the generosity of MDA partners and donors, many appearances at events (both in person and online) where I brought enthusiasm and encouragement, and quarterly articles sharing my personal journey to motivate others—I feel that I have made an impact.

My trips to Washington, D.C. allowed me to advocate for a brighter future, and throughout this journey, members of the community have reached out to express how my work has helped illuminate new possibilities for them. Although my time as a National Ambassador has come to a close  and so much more can be and will be done, I’m confident that my time, energy and purpose has been successful.

The opportunity to give back

In 1978, my parents welcomed my sister Romanda into the world. Six and a half years later, I was born. At the time of my birth, my father was serving in the army, leaving my mother to care for her infant daughter on her own. When my sister was about one year old, my mother noticed some unusual physical behaviors. Following the pediatrician’s advice, she took Romanda to a neurologist, who diagnosed her with spinal muscular atrophy (SMA). Although my mother was nurturing and determined, she realized she needed guidance and support to best care for a child with such a unique condition.

Fortunately, she found the help she needed at MDA, where a dedicated team provided resources and hope, helping her navigate the challenges ahead. A few years later, after my father returned from the army and began a career in law enforcement, I was born. Around my first birthday, it was discovered that I too had SMA.

Having two children with this diagnosis might seem overwhelming, but my parents faced the reality together and excelled at ensuring that both of their children lived fulfilling lives. Their success was made possible thanks to the incredible support network at MDA. Our family has thrived because of MDA’s unwavering presence in our lives. I am forever grateful for everything MDA has done for us, and serving as National Ambassador gave me a valuable opportunity to express my deepest appreciation.

What’s on the horizon

Over the past two years, I’ve experienced an important period of personal growth, allowing me to concentrate on what I value most: offering hope and support to the neuromuscular community through my life experiences. My role as National Ambassador offered me a platform to cultivate connections with members of the community. My dedication to creating meaningful contributions and connections has only strengthened – and I will continue to prioritize those connections. This year, I released my debut fiction novel, “Torn Branches,” which can be found on Amazon, Apple Books, and Barnes & Noble. As an author, I’m passionate about continuing to write stories that celebrate the resilience and determination of people with disabilities, aiming to inspire through both literature and other projects.

As I look to the future, I am confident that the ongoing progress in research will continue and that so many positive changes are on the horizon. Our community’s future looks promising, and I’m convinced that our youth will shape the path ahead. The power of young advocates is exemplified by  National Ambassador Lily Sander. The talents and dedication of Lily and other advocates are vital in sustaining and enriching our community. Their innovation, commitment, and uplifting influence fill us with optimism for what’s to come.

In closing, I would like to share advice that has guided me over the years. My father once told me that carrying a smile and a spirit of gratitude each day is essential. While challenges are inevitable, it is important to recognize that many people would be grateful to be in your position. I encourage everyone to embrace this mindset and consistently strive to present their best selves in all aspects of life. It has been an honor, a privilege, and a great blessing to be your National Ambassador.

Thank you!!

Ira J. Walker III