Fiona is mama to Casey, a 2 year old living with Prader-Willi syndrome. She shared with me her birth story and the challenges that arose from some common PWS characteristics. We also talked diagnosis, not looking too far ahead, and the beautiful lessons that can be learned from being the mother to a child born with a genetic condition. I also share a recently written piece called, “This Is Not Political.”
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Fiona is mama to Casey, a 2 year old living with Prader-Willi syndrome. She shared with me her birth story and the challenges that arose from some common PWS characteristics. We also talked diagnosis, not looking too far ahead, and the beautiful lessons that can be learned from being the mother to a child born with a genetic condition. I also share a recently written piece called, “This Is Not Political.”
I would imagine that most of us in the PWS world have now heard of FPWR – the Foundation for Prader-Willi Research. If you haven’t, this episode is a great start. I spoke with Executive Director, Susan Hedstrom, to learn more about FPWRs foundation, intention, and actions. I also learned how families can participate in clinical trials, creating a One Small Step fundraiser, and the importance of the Global Registry. If someone you love has PWS, I highly recommend learning more about FPWR and how you can help raise money and awareness. You can learn more about FPWR at fpwr.org.
Walking with Freya
Fiona is mama to Casey, a 2 year old living with Prader-Willi syndrome. She shared with me her birth story and the challenges that arose from some common PWS characteristics. We also talked diagnosis, not looking too far ahead, and the beautiful lessons that can be learned from being the mother to a child born with a genetic condition. I also share a recently written piece called, “This Is Not Political.”
