Once Upon A Gene

Once Upon A Gene

by

As a new parent of a child with a rare genetic syndrome, I was lost. There was no guide. There was no rulebook. This was not what I had imagined. As I navigated my way through this new reality, I realized something that should have been simple, but was not. A truth that had always been there, but that I had lost sight of for a time – I am not alone. And neither are you. These are the stories of my family, and of families like ours. These are the stories of how we have persevered, cried, bonded, and grown. These are the stories of children who have been told that they cannot, and that have proved the world wrong.

Recent Episodes

  • From Heartbreak to Hope - With CEO of Parent Project Muscular Dystrophy, Pat Furlong

    1 week ago
  • Effisode - The Irony of it All

    2 weeks ago
  • These Two Rare Disease Parents Never Met Until Now and Have Everything In Common - Chronic Compassion Chronicles with Kim Gilsdorf and Daniel DeFabio

    2 weeks ago
  • Utilizing Child Life Specialists - Empowering Rare Disease and Medically Complex Families in Hospitals Nationwide with Child Life On Call Founder - Katie Taylor

    3 weeks ago
  • A Rare Collection - Five Advocacy Aces Share Their Conference Commandments

    1 month ago
  • Effisode - 2023 SynGAP Cannonball for a Cure

    1 month ago
  • Fundraising Strategies for Patient Advocacy Organizations Raising Money for Rare Disease Research with Lindsay Stevens

    1 month ago
  • Navigating Parenthood as a Rare Mom - Expert Insights into Special Needs Financial Planning with Mary McDirmid from Special Abilities Network

    1 month ago
  • Effisode - The Unconventional Toothfairy

    2 months ago
  • Advocating with Heart - Striking the Balance Between Medical Insights and Personal Narratives - A Tribute to Valerie Marie with RING14 Co-Founder Yssa Dean DeWoody

    2 months ago