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Loss, lessons, and a lifelong legacy - Rachael Casella's story
Manage episode 381848438 series 3525766
Contenido proporcionado por The Patient Voice Initiative. Todo el contenido del podcast, incluidos episodios, gráficos y descripciones de podcast, lo carga y proporciona directamente The Patient Voice Initiative o su socio de plataforma de podcast. Si cree que alguien está utilizando su trabajo protegido por derechos de autor sin su permiso, puede seguir el proceso descrito aquí https://es.player.fm/legal.
With Rare Disease Day coming up on the 28th of February, The Patient Voice Podcast is proud to share Rachael Casella’s story.
Rachael is a campaigner and activist for genetic carrier screening, IVF education, and reproductive health. After losing her daughter Mackenzie at just 7 months old to spinal muscular atrophy type 1 (SMA), Rachael realised that genetic carrier screening could have identified the risk of this sooner, if only it had been offered to her and her husband during her pregnancy.
She has now dedicated her life - and her daughter’s legacy - to helping other parents access genetic carrier screening.
As an investigator with Mackenzie’s Mission, a research project for genetic carrier screening, and author of Mackenzie’s Mission, Rachael is a powerful force in the advocacy space.
Her dedication and commitment under circumstances that most find unimaginable, is breathtaking.
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