Our Story

A Family’s Mission

On May 9, 2016, Willow Cannan, the two-year-old daughter of Tom Cannan and Amber Olsen, was diagnosed with a terminal disease called Multiple Sulfatase Deficiency (MSD) — a rare genetic disease which left Willow’s body unable to process the natural cellular waste made in normal everyday organ functions.

After Willow’s diagnosis, Tom and Amber were determined to fight this disease in every possible way. In 2016, after meeting with researchers, doctors, and other parents with children with MSD from all over the world, Amber established the United MSD Foundation with a single yet powerful mission: to cure Multiple Sulfatase Deficiency.

Two-year-old Willow Cannan was diagnosed with MSD in 2016. Her parents started a grassroots movement to raise awareness about the disease. Later that year, her mother established the United MSD Foundation with one single goal in mind — finding a cure.

While Willow steadily declined, Amber’s personal determination was to provide treatment options to children facing this disease and that never wavered. She continued to push forward, while also caring for Willow and Willow’s older sisters and running her staffing services business.

From the start, Amber developed relationships with other parent-run foundations in Argentina, Ireland, and Spain, as well as the other two US-based foundations. All were actively funding research for viable treatment options into development.

In early 2023, in anticipation of our research partners at Children’s Hospital of Philadelphia receiving a FNIH Bespoke Gene Therapy Consortium grant to fund first-in-human gene therapy clinical trials, Amber stepped away from direct Foundation involvement. She left the Foundation in the hands of a capable new Executive Director and an engaged Board of Directors. The Foundation continues forward with the mission to cure MSD as it supports MSD families in 17 countries.