Letters from Leah: “Fin” (A Farewell Note)

Dear Friends,

What an honor it has been to be one of MDA’s National Ambassadors! I will never forget all the amazing connections and friendships I have made along this journey. There have been many impactful pivotal moments in my time as an ambassador. I can’t believe how fast these two years have gone by. Throughout this time, I have met so many incredible individuals living with muscular dystrophy leading the way to create change in our community. I have seen firsthand what the Muscular Dystrophy Association does for families and the communities around them. MDA fights every day to create more awareness, increase accessibility, and encourage people living with neuromuscular disease and their families to live their best lives.

With that said, this brings me to the first of many impactful memories: the MDA Clinical and Scientific Conference brings together worldwide neuromuscular disease experts and has led breakthroughs in the latest research, treatments, and care. This conference has allowed me to see behind the scenes of how MDA works. It has empowered me to continue to share my story and to help others.

Another one of my favorite memories is advocating with my family at our nation’s Capital, sharing our personal stories to legislative officials to create change nationwide. It is incredible to see so many people in our community come out and raise awareness for not only ourselves, but for the younger generation too. I was born and raised in New York City, and it is known for having beautiful buildings and being hectic. Because of the amount of action that takes place, oftentimes the needs of people living with disabilities are not thought about. Now more than ever, I have seen increased awareness and changes made for people who have disabilities because of the work that is being done in Washington D.C.

In the spring of 2024, I had the privilege to attend the DECA Conference in Anaheim, California. DECA is a worldwide educational conference that supports national curriculum standards and the development of the 21st century. I had the opportunity to speak to approximately 20,000 students and advisors. DECA has a partnership with MDA and has raised funds for people living with NMD for 30 years. It was incredible to witness people my age display so much dedication and passion. I was so moved by the work that they do and the encouragement they displayed towards me.

Most of all, as National Ambassador, the most impactful experiences that I have had were the people that I have met along the way. I would especially like to thank Scott Wiebe, Dr. Donald S. Wood, Dr. Chris Rosa, Mary Fiance, Amy Shinneman, Mindy Henderson, and Justin Moy for making my ambassadorship a pleasant experience. In my 2-year term as National Ambassador, I also had the honor to connect with you – the reader. Thank you all for your loving support and encouragement. I am so proud to be a part of the neuromuscular disease community. While my time as a National Ambassador is coming to an end, I look forward to continuing to grow together with you.

Love,

Leah