Dr Kirsten Johnson
Dr Kirsten Johnson is one of the founders of Fragile X International and is President of FraXI.
Kirsten joined the board of the UK Fragile X Society in 2016, and became Chair in 2018. She also sits on the board of EURORDIS, the European Rare Disease organisation, and is active on their Newborn Screening Working Group.
Kirsten was one of the co-authors of the 2022 Cells article which led to the renaming of the FMR1 gene and protein, removing offensive and outdated terminology (https://www.mdpi.com/2073-4409/11/6/1044/htm). She has also co-authored a 2020 article in Frontiers, on Fragile X Premutation Associated Conditions (https://www.frontiersin.org/articles/10.3389/fped.2020.00266/full).
Kirsten is a premutation carrier and has two adult daughters who live with Fragile X Syndrome. She works as a professional musician - more information on her work and recordings is here: www.kirstenjohnsonpiano.com.