For many families, an ALS diagnosis changes everything in an instant. For Jeff Kurkjian, it was the beginning of a journey marked by heartbreak, advocacy, and a commitment to making a difference for others facing the disease. In 2021, Jeff’s uncle was diagnosed with ALS after experiencing weakness in his hands, a persistent sore throat, and unexpected falls. What initially seemed like minor symptoms quickly escalated. After months of doctor visits, the diagnosis was confirmed. He passed away in 2023. Like many, Jeff and his family had heard of ALS but didn’t fully understand its impact until it became personal.
“Being a baseball family, we were familiar with ALS through Lou Gehrig Day,” Jeff shared. “But we had no idea what the disease really entailed. I remember googling it and being absolutely devastated to read ‘2–3 year life expectancy.’”
That moment became a turning point. Rather than standing still in the face of uncertainty, Jeff and his family began learning everything they could, getting involved, and finding ways to give back.
Today, Jeff uses his platform as a radio and podcast host to raise awareness about ALS and ensure more people know that support is available.
“It’s so important to spread the word that there is help out there for patients and their families,” he said.
One of the most meaningful ways Jeff has stayed connected to the ALS community is by serving as emcee for ALS United Mid-Atlantic’s Help & Hope Symposium. The event brings together individuals and families navigating ALS, along with experts dedicated to advancing care and research.
“My favorite thing about this event is that nothing is off-topic. There’s no tiptoeing, just open conversation, shared details, and real help”
For Jeff, the symposium is also a reminder of progress.
“I appreciate knowing there are people out there dedicating their lives to finding a cure and better understanding this disease. Even since my uncle’s diagnosis, there has been progress.”
Beyond the Help & Hope Symposium, Jeff has also taken initiative in his own community by hosting a “Tasty Talk” event alongside a local realtor to raise awareness and share his uncle’s story. It’s a story he continues to tell whenever given the opportunity.
“I said from the moment he was diagnosed that I would never turn down an opportunity to spread awareness.”
Through it all, one message stands out: no one must navigate ALS alone.
“Seek the help of groups like ALS United Mid-Atlantic,” Jeff shared. “There is so much equipment available that can help, but it can be overwhelming to navigate insurance or afford it. These organizations can make things more bearable.”
When asked why others should get involved, Jeff keeps it simple:
“Volunteer because every little bit helps. Without volunteers, these incredible events wouldn’t be possible. Encourage friends and family who ask, “How can I help?” to get involved with this organization—it truly goes a long way.”