Our Story

In 2010, at thirty-five years old, I was diagnosed with ALS. There are no words adequate for that moment — not for me, not for Amy, not for our family.

But we were given something many ALS families are not: time. My progression was slow, and that mercy allowed us to be thoughtful about the path ahead. I continued working for two more years before stepping away to focus on what mattered most — our family and whatever time we had together.

How ALS Crowd Was Born

In the spring of 2014, our dear friends Jenny and Paul Ahlstrom invited us to form an ALS division of their Crowdcare Foundation. ALS Crowd was born — and we hit the ground running.

A chance encounter with a film crew during my very first visit to our local ALS clinic led to something none of us expected. KSL, Salt Lake City's NBC affiliate, showed up to film the first live episode of ALS Crowd Radio — just weeks before the Ice Bucket Challenge swept the globe. KSL's coverage expanded to include our family's story, our Ice Bucket Challenge with the Utah State Senate, and ultimately a thirty-minute special called Life's Miracles. The timing was extraordinary. The Ahlstroms' support, the Challenge, and KSL's spotlight combined to give our fledgling foundation a national voice.

A Mission Takes Shape

Through ALS Crowd Radio, we interviewed researchers and heard directly from patients and families across the ALS community. A clear mission emerged: break down the barriers that prevent researchers from accessing the patient data they need to understand this disease. We partnered with researchers, lobbied legislators and entrepreneurs, and worked with my former employer, Microsoft, to advance this cause. The result was a groundswell of new patient datasets that hadn't existed before.

When the Disease Took My Voice

As my ALS progressed, I lost the ability to conduct interviews on the radio. We retired ALS Crowd Radio — but the mission never stopped.

In 2017, Amy and I were invited to share our story with the team at Denali Therapeutics, a biotechnology company dedicated to defeating neurodegenerative diseases. The following spring, I became Denali's first Patient Fellow. In that role, I've worked to advance ALS research across the United States and, beginning in 2019, Western Europe. My partnership with Denali continues to this day.

A New Chapter

In 2020, the Crowdcare Foundation — now The HealthTree Foundation — supported our growth by spinning ALS Crowd out as an independent organization. Free to chart our own course, we expanded our focus. A years-long conversation with friends about the crushing pressures facing ALS caregivers led us to launch our first caregiver relief grants in 2021, providing direct financial support to ALS families in the Salt Lake City area.

Today, ALS Crowd continues to evolve. The ALS Community Directory is our latest initiative — a comprehensive, searchable resource connecting patients, caregivers, and families to the organizations, clinics, and support they need. All in one place. All free. All built by the community, for the community.