The past several months have been some of the most difficult in our organization’s history. We are still grieving the tragic loss of Tommy Harrell, a leader, advocate, friend, and driving force behind everything this organization has accomplished. His passion for helping people living with ALS was contagious. His commitment to patients and families was unwavering. His impact can be seen in every family we support and every life we touch.
Taking over after Tommy’s passing is not something I ever imagined I would be doing. The truth is that his shoes are enormous. There is no replacing someone like Tommy. His vision, leadership, and heart helped shape this organization into what it is today. Every day, I am reminded of the standard he set and the legacy he leaves behind.
I have spent a great deal of time reflecting on what Tommy would want for this organization moving forward. The answer is actually quite simple: he would want us to keep going. He would want us to continue showing up for patients and families facing one of the most challenging diagnoses imaginable. He would want us to keep advocating for better care, greater awareness, and more resources. He would want us to continue building a community where nobody affected by ALS feels alone.
That commitment remains stronger than ever.
While leadership may have changed, our mission has not. Every member of our team remains deeply dedicated to supporting individuals living with ALS and the people who care for them. We understand that behind every diagnosis is a person with hopes, dreams, fears, and a family navigating an uncertain future. Our responsibility is to stand beside them every step of the way.
As I step into this role, I do so with humility and gratitude. I am grateful for the trust that has been placed in me. I am grateful for the dedicated staff, volunteers, donors, and supporters who continue to believe in our work. Most importantly, I am grateful for the patients and families who inspire us every day with their resilience, courage, and determination.
In the coming months, I hope to use this blog to share updates about our programs, highlight stories from the ALS community, discuss advances in research and care, and provide a closer look at the work happening behind the scenes. Transparency, communication, and connection will be important priorities as we move forward together.
We will undoubtedly face challenges ahead. ALS remains a devastating disease, and there is still so much work to be done. But if Tommy taught us anything, it is that meaningful progress comes from persistence, compassion, and an unwavering belief that every patient deserves support, dignity, and hope. While we mourn his loss, we also honor his life by carrying forward the mission he cared about so deeply. Every family we help, every resource we provide, and every step we take toward a world without ALS is a testament to the foundation he built.
Thank you for standing with us during this transition. Thank you for believing in our mission. And thank you for helping us ensure that Tommy’s vision continues to make a difference in the lives of people affected by ALS. We are excited to relaunch our grant process next month and look forward to helping NC residents battling this awful disease.
We have big shoes to fill. But together, we will continue the work. And together, we will keep moving forward.
Winning isn’t everything. But wanting to is. -Jim “Catfish” Hunter
