Former college basketball player Dan Lier knew something was wrong in 2017 when, after a game, he was taking too long to recover, and his entire body was sore. He began taking spinning classes but soon gave up. He then tried yoga, but the poses caused him to pass out.
“I thought I was just getting old,” said Lier, a towering figure at 6 foot 8 inches who, at the time, was living in Las Vegas with no history of health problems.
Lier’s health worsened, and he developed a high, irregular pulse and wouldn’t go to sleep at night because he was afraid he wouldn’t wake up.
One of those nights, he decided that he’d finally had enough.
“I had an appointment for the Mayo Clinic in 2 weeks’ time, but couldn’t wait,” Lier recalled. “I drove to the airport, caught a red-eye flight from Las Vegas and flew to Minneapolis, then rented a car and drove to Rochester. I showed up at the emergency room at 4 in the morning with an overnight bag. They thought I was crazy.”
A cardiologist at the Mayo Clinic told Lier: “There’s definitely something wrong with you, but the good news is you’re not going to die tonight, so you need to go home.”
He went home and returned two weeks later as scheduled. That’s when he was diagnosed with light chain (AL) amyloidosis — the most common form of amyloidosis, a family of rare diseases that most often affect men 60-70 years old.
Helping others find new mindsets
Lier spoke to ATTR-CM Companion (sister site to DMD Companion) at the 2025 World Orphan Drug Congress in Boston. The 62-year-old motivational speaker is now a partner with the nonprofit organization Somebody To Talk To. The group’s stated mission is “to make accessible professional patient education and support free to every rare disease family by overcoming barriers such as cost, stigma, bias, and access to medical professionals.”
Lier heads the group’s Amyloidosis Outreach Program, though the nonprofit is also planning to expand to other rare disorders, including Duchenne muscular dystrophy and sickle cell disease.
After his diagnosis, Lier began making YouTube videos for his family about the disease and its various aspects — treatments, clinical trials and the like.
“Pretty soon, I had amyloidosis patients from all over the world contacting me,” he said. “While making these videos, I was optimistic. I was positive. I talked about getting better, and people were attracted to that.”
What makes Somebody To Talk To special, he said, is that it teaches patients how to improve their quality of life by focusing on mindset and life improvement activities. Each week, patients join a 50-minute Zoom session consisting of 15 minutes with an expert and 35 minutes for patient interactions, discussions and questions.
“Sometimes we have 150 people on a call, including patients and caregivers,” he said.
The programs offered by Somebody To Talk To are all free. Funding comes from drugmakers that make treatments for amyloidosis.
Lier’s partner at Somebody To Talk To, internet technology guru Dan Gusick, recently co-authored with Lier the Rare Disease Playbook. Available in print and online, it’s the culmination of nearly three years of work and is divided into five modules: mindset, strategy, teamwork, the big picture and “your next move.”
The essence of the playbook is that “all of us in the rare disease world are in the same boat.”
“A lot of the things we accomplish in life have to do with things that are outside of the skill set we might be working on. For instance, you could have basketball skills, but without hustle, without mindset, without a great attitude, you’re not going to be able to play,” Lier said. “I took that same attitude when I got diagnosed with amyloidosis.”
Early lessons on adversity
In his younger days, Lier played basketball for the University of Toledo in Ohio, later ending up at Fort Hays State University in Hays, Kansas. After four years as an athlete, he coached for several more years, then earned a master’s degree and ended up running the seminar division for prominent life coach Tony Robbins, whom he called “one of the top motivators and success coaches in the world.”
“I was blessed to be able to play for a team that won two straight national championships in college,” he said. “But it’s not the basketball that was important. It’s about what basketball taught me about mindset, overcoming adversity, mental toughness, hard work, hustle — those kinds of things.”
Lier is still dealing with the symptoms of his disease, and was recently fitted with a pacemaker because his pulse has slowed to 38 beats per minute. Yet that hasn’t diminished his unbridled optimism in the least.
“My message is this: Attitude and hustle make up for a lot of deficiencies — whether you’re fighting a rare disease, or you’re trying to start a new company,” he said. “Mindset is 90% of your success. I wouldn’t be here today if it wasn’t for my mindset.”
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