Ms Cheryl Simoens is the Chair of the Adult Leadership Advisory Board of the Cystinosis Research Network. She works full-time as a program coordinator helping university students secure Co-op/Internship placements in the field of engineering. Cheryl was diagnosed with nephropathic Cystinosis when she was 9 months old and was a two- time kidney transplant recipient by age 31. Cheryl is now thriving at the age of 36 in her hometown of Winnipeg, Manitoba, Canada. She loves cooking, rock climbing, weightlifting, wakeboarding, kayaking, hiking and snowshoeing. Cheryl dedicates many hours volunteering with organizations to provide support and advocacy for others living with the same rare disease. She volunteers with the Kidney Foundation of Canada, Manitoba Branch providing talks to promote physical and mental well-being in the kidney community and assists with fundraising efforts. She received a volunteer of the year award in 2016 for the time she has committed. She along with other adults living with cystinosis from the ALAB created a new podcast, ‘Cystinosis Rare: A Journey into the Unknown.’.