Author: Catriona Moore

Catriona Moore has a background in policy and communications and has worked for a number of health, social care and disability organisations. When her younger daughter was diagnosed with Rett Syndrome in 2009 shortly before her second birthday, Catriona found herself dealing in practice with things she’d previously thought she understood in principle. She juggles her work as policy manager for a national charity with caring and advocating for her daughter. She's passionate about improving the lives of disabled children and their families, and making the systems that should support them work more transparently and equitably. Catriona writes for Special Needs Jungle in a personal capacity, and all views expressed are her own.

Columnists, patient advocacy, Rare Disease, special needs

My “control freak’s guide” for my disabled daughter’s dignity and care in hospital

By Catriona Moore December 3, 2018 December 3, 2018

The thing that worries me most about my disabled daughter as she gets older is who will understand her. Who will really get to know who she is, and what …

Columnists, Rare Disease

Partnering with clinicians to reverse Rett, my daughter’s rare disease

By Catriona Moore February 28, 2018 February 28, 2018

“Did you say ‘Retz Syndrome’? How do you spell it?” These were the questions I asked the neurologist who speculated in passing that this might be the explanation for why …

accessibility, Inclusion, special needs

Fighting for my disabled child’s right to summer fun

By Catriona Moore August 23, 2017 August 21, 2017

Tania’s note: Today we’re welcoming a new columnist to SNJ, Catriona Moore. Catriona is the parent of a child with complex needs from the rare disease, Rett Syndrome. She works …