Cal's Cupcakes Blog

Inspiration and Hope 

An open letter to GSK CEO Emma Walmsley

The news that GlaxoSmithKline would divest from rare diseases intrigued industry watchers and left employees at the UK's largest pharmaceutical worried about their livelihoods. But, for patient advocates like myself who had watched GSK become a global leader in the three decade long effort to pioneer gene replacement therapies, the news was devastating. One of the treatments GSK will sell is a gene therapy for metachromatic leukodystrophy (MLD). My daughter Cal, who is now 7, was diagnosed with MLD at age 2. In three months, Cal lost the ability to walk, talk, and eat. She uttered her final world five years ago last August: "Daddy." Today, Cal is paralyzed, blind and receives hospice care.

What Cal taught us

It was a pleasure to be part of Cal’s Cupcake Challenge and experience the immense impact that Cal, supported by her family and community, has had on raising awareness and support for leukodystrophy. As future nurses, we are dedicated to supporting our patients while they fight against illnesses. This event taught us that our duty, as nurses, is not only to provide direct medical care for our patients; we are also called to join the families of our patients in an effort to advance research for and awareness of diseases, like leukodystrophy, in order to improve clinical outcomes. Within minutes of arriving to Cal’s Cupcake Challenge, the strength that Cal demonstrated was incredible and left

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