Cal's Cupcakes Blog

Inspiration and Hope 

November 12, 2019

The minute you learn your child has a diagnosis of a terminal illness, you die too. You are not literally dying.  It is a psychic and emotional death since your old life has come to an end, and the person you were must cease to exist.  

That is why the we...

August 15, 2019

Yesterday's New York Times featured an editorial about the cost of gene therapy and the recent controversy surrounding Norvatis's gene therapy for SMA.  

Here is co-founder, Maria Kefalas' response to the New York Times.  

Today’s opinion piece on the gene therapy pricin...

Filmmaker Joanna Rudnick travelled from California to spend time with Cal and tell her story. We were honored to be featured among seven rare disease advocates around the nation who were spotlighted by the Chan Zuckerberg Initiative. There is a power in storytelling, a...

August 2, 2019

Seven years ago, the doctor came into our hospital room at the Children's Hospital of Philadelphia and pulled up a chair and told me :"We think your daughter has a disease called metachromatic leukodystrophy or MLD." D-day comes around my birthday and so this period fr...

December 9, 2017

Back in the old days, when I was not nearly so good at impersonating a courageous person, I wrote a blog under the name "The Recovering Supermom."

Of all the essays, I wrote back  when I was just learning  how to to be the mom to a kid with leukodystrophy, this on...

October 25, 2017

This is the text of a speech Calliope Joy Foundation founder Maria Kefalas gave at the National Organization of Rare Diseases (NORD) Summit in Washington, DC on Monday, October 16th.

Every single day, I wake up thinking about how to get gene replacement therapy to the c...

 Nicole Kefalas, Cal's aunt and godmother, and Cal share the same birthday, December 23rd.

And in 2013, just a few months after Cal's diagnosis with leukodystrophy, Nicole learned she had MS.

This diagnosis was a far more ominous connection.  Multiple scle...

October 6, 2017

            Augie (center) with 4W- and their new squishable pug 

     

Each year before the Cupcake Challenge I go to Cynwyd Elementary School and visit with some of the 4th grade classes to talk about our daughter Cal in whose ho...

September 27, 2017

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 thr...

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...

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