ÜBER DIESE EPISODE
We're overjoyed to welcome Daniel DeFabio to the studio this week. We speak about his son Lucas, who had Menkes Disease, and about the stages of grief, paying it forward, the work he's doing on Global Genes and the creating of The Disorder Channel.
Menkes Disease letters + numbers: ATP7A
globalgenes.org/
https://www.thedisordercollection.com/
Englisch
Vereinigte Staaten
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WEITERE EPISODEN IN DIESEM PODCAST
We're honored to welcome Shawna to the studio this week to talk about her son Keenan and his journey with Microcephaly Capillary Malformation Syndrome. From seizers to surgeries and seeing specialists in two states, their strength is palpable. Now Shawna is paying it forward by creating counseling …
This week, Kim Bradley shares her journey being a rare disease mom. Her daughter Laelynn (which is means 'flower of hope'), has faced 100's of surgeries and continues to shine a light of love. We discuss everything from Laelynn's day-to-day care, parenting a big family, PCA (patient care assistant)…
We're honored to have Amy Butterworth in the studio this week to talk about her daughter Cindy Sue. It's a emotional ride and we're grateful for Amy's vulnerability and authenticity.
What a pleasure it was this week, to connect with Ashley about her connection to loss. Her ability to apply experiences being a Reiki Master, reading tarot cards, working in hospice, and studying astrology and signs, means she has an incredibly interesting POV on life, dealth, and everything in bet…
November is Pancreatic Cancer Awareness month. It's considered a rare cancer, since about 3% of all new cancer diagnoses are Pancreatic but it's become a significant public health issue because it is the eighth leading cause of cancer death. We welcome Kate McKenna to the studio to shed light on a …
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