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Dr Kirsten Johnson is the President and one of the founders of Fragile X International. She also sits on the boards of EURORDIS - Rare Diseases Europe.

Kirsten is a FMR1 premutation carrier and has two adult daughters who live with Fragile X Syndrome.

Her husband lives with a rare cancer, hairy cell leukemia.

Durhane wong rieger biography for kids

Kirsten works as a professional musician.

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the co-authors of the 2022 Cells article which led to the renaming of the FMR1 gene and protein, removing offensive and outdated terminology. She has also co-authored a 2020 article in Frontiers, on Fragile X Premutation Associated Conditions 'and was lead author on a 2024 article in JARID on a holistic approach to Fragile X Syndrome.

Kirsten says, “Like many people globally, I had not heard of our rare conditions until my daughters and husband were diagnosed.

As a member of RDI’s Council, I will work for global policies on diagnosis, treatment and support, so that no-one is discriminated against or left behind.”