Cal's Cupcakes Blog

Inspiration and Hope 

How much would you pay for a miracle?

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 pricing debate was disappointing, to say the least. You offer a definition of SMA that looks like it was lifted from Web MD and then you launch into this same old pricing debate and diatribe about the FDA. You also did not speak to one single patient family. So, please let me address the gaping holes in the piece. My youngest daughter Cal has metachromatic leukodystrophy or MLD. MLD is in the same family as Tay-Sachs disease, if ALS

Chan Zuckerberg Initiative showcases Cal

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, and we hope our story shows that even something as simple as selling cupcakes in a parking lot can make an impact.

Cal's Cupcakes featured by Chan Zuckerberg Initiative

Cal's Foundation was one of seven rare disease advocates from around the United States featured by the Chan Zuckerberg Initiative. Filmmaker Joanna Rudnick spent time with Cal to tell the story of Cal and the cupcakes and how something as small as selling cupcakes in a parking lot can become so much bigger. #cupcakes #ChanZuckerbergInitiative #rareasone #leukodystrophy #curesnow #breakthrough #genetherapy #raredisease #advocatelikeamother

On the 7 year anniversary of Cal's diagnosis

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 from June 26th to the 5th of July, when David Wenger would confirm the MLD diagnosis, is challenging to say the least. But each year, as I meet newly diagnosed families, I get to tell them how Cal was not supposed to be here now, that no one could have been more terrified and overwhelmed than I was, and yet, here we are somehow doing things and living a life that seemed impossible seven years ago. Hearing your child has a life-li

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