The Spoonie Podcast with Emily Fraser and Richard Kellner
Oct 13, 2023
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The Spoonie Podcast focuses on helping those with chronic conditions to live well. Host Emily Fraser speaks with pkDO founder Rich Kellner about the 100 PKD-free Babies initiative and its goal to end PKD with the next generation of children.
Emily introduces herself and Richard and talks about her PKD diagnosis and how she became involved with 100 PKD free babies.
Richard talks about his wife Joanne who had PKD and how it passes down to 50% of children if a parent has it. He explains that after his wife passed, he reexamined whether there is something more his children can do to slow the progression of the disease with diet and therapeutics.
Richard describes how to prevent the disease from passing onto the next generation with preimplantation genetic testing (PGT-M). Richard describes how his children will prevent PKD from passing down to the next generation.
Emily and Richard talk about live kidney donation and how he came to start pkDO.
Emily and Richard talk about the 100 PKD-free Babies initiative and its goal to end PKD with the next generation of children and grandchildren by helping to fund PGT-M for families looking to start a family.
Emily and Rich talk about the 100 PKD-free Babies initiative and how Emily and her mother live with their PKD diagnosis, including live kidney donation and the often 7-year long list wait for a kidney.
Emily and Rich talk about how important it is for kidney patients to advocate for themselves.
Emily talks about when she was diagnosed with PKD and why she decided to use PGT-M and IVF to start her family.
Rich and Emily talk about how PGT-M works with the IVF process.
Rich and Emily talk about freezing eggs for younger women with PKD who are not yet ready to start a family.
Emily and Rich talk about the importance of finding the right doctor for infertility issues and new options available for families today.
Advice for what to do when you have PKD and wrap up.
If you have PKD and are looking to start a family without passing it to your children, pkDO may be able to help with funding for your PGT-M probe. Learn how
ENDING PKD IN THE NEXT GENERATION
pkDO will fund pre-implantation genetic testing (PGT-M) for 100 families, to enable a new generation of children to be born without PKD.
