I was diagnosed with ALS in 2010 at age 35. Words can’t convey what that experience was like for us. Mercifully, my progression was slow and allowed us time to gather ourselves and be thoughtful about our new path. I worked for two more years before taking leave to focus our unknown time together on our family. 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!
Under the Crowdcare umbrella we hit the ground running. Following a chance encounter with a film crew during my first visit to our local ALS clinic, KSL, Salt Lake City’s NBC affiliate, was present to film our first live episode of ALS Crowd Radio just prior to the global phenomenon known as the Ice Bucket Challenge. KSL’s filming expanded to include family projects, including our ICE Bucket Challenge with the Utah State Senate. KSL aired Life’s Miracles, a 30-minute special about our experiences, in early October. The Ahlstroms, the Challenge, and KSL’s coverage combined to create ALS Crowd and give our fledgling foundation a national voice and opportunity to impact ALS.
Our ALS Crowd Radio interviews with researchers and callers from the ALS community gave us our initial mission—the aggregation of patient data for researchers. We worked with researchers and lobbied legislators, entrepreneurs, and my former employer, Microsoft, to assist in this mission, ultimately seeing a groundswell of new patient datasets.
As my ALS progressed I lost the ability to interview researchers on the radio. We retired ALS Crowd Radio, but continued our mission to break down the barriers preventing researchers from understanding ALS. In 2017, Amy and I were invited to share our story and mission with the staff of Denali Therapeutics, an innovative biotechnology company dedicated to defeating neurodegenerative diseases including ALS. I became Denali’s first Patient Fellow the following Spring and, in this role, pursued our shared mission to advance ALS research in the US and, in 2019, Western Europe. My involvement with Denali continues to this day.
In 2020, the Crowdcare Foundation (now The HealthTree Foundation) enabled us to pursue our unique mission by spinning ALS Crowd out. In 2021 a multi-year conversation with friends about the pressures facing caregivers led to us expand our mission and give our first caregiver relief grants to ALS families in the Salt Lake City area.
We thank each member of our community for allowing us to serve the ALS community. Special thanks to the donors who make it possible for us to pursue our mission, including the Blues Barbershop who founded a car show that continues to be our largest fundraising event. We hope to represent you well until ALS families no longer need our help!
