Truls lives in Bergen, Norway with his family; his wife Birthe and their 3 children Pernille ML III, Mia & Stine (who are both unaffected).

Pernille was born in 2009 and diagnosed with ML III in 2012. Since then, they have attended rare disease family/medical conferences in both USA and Europe. Truls and his family has earlier had board positions and worked with the Norwegian MPS society and ISMRD.

After many years in finance Truls now works with Human Resources as Head of the business area in an international consulting company. Truls is excited to join the Board of Directors to help further the mission of finding a cure to mucolipidosis.