CTNNB1 Connect and Cure

The CTNNB1 Connect and Cure Podcast is for anyone looking for information on CTNNB1. Listen to the latest information, research, stories, and ideas while connecting to other people in the CTNNB1 community.

CTNNB1 Connect and Cure is a kids podcast hosted by Annie, with 40 episodes on record and a Required Pod Score of 80.

Annie hosts CTNNB1 Connect and Cure, a kids show with 40 episodes published.

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  Episode #40

  Ashley Werths recap of her first CTNNB1 Connect & Cure conference in 2025

  Oct 1, 202632 minS2

  In this episode, Toni spends some time talking with Ashley Werths about her first experience at the 2025 CTNNB1 Connect & Cure Conference. Ashley shares her journey as mom to Chandler, the connections she has made within the community, what she learned from the speakers, and how the experience changed her perspective. From overcoming first-time nerves to finding a place where hope, understanding, motivation, and community come together. Ashley's recap reminds us that we are stronger together and we can't wait to make more memories and build stronger connections at this year's conference! https://www.curectnnb1.org/ #raredisease #syndrome

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  Episode #39

  Forward Together - 2026 Conference Update with Emily Amerson

  Sep 7, 202628 minS2

  In this episode Toni talks with CTNNB1 Connect & Cure President Emily Amerson about the upcoming conference in Boston. They discuss what to expect at this year's conference, including the Natural History Study, Biorepository samples, family activities, exciting research updates, and family connection. There is so much to look forward to as our community comes together to learn, connect and keep moving forward together! https://www.curectnnb1.org/ #raredisease #syndrome

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  Episode #38

  Meet the Newest Board Members for CTNNB1 Connect & Cure

  Aug 1, 202643 minS2

  In this episode we get to know the newest members of the CTNNB1 Connect & Cure Board of Directors! Host Toni Paes talks with Ashley Hamic, Chief Operating Officer and Secretary, Anita Chang, Treasurer and Luke Dreckman, Co-Director of Fundraising. They discuss their families' CTNNB1 journeys, the professional experience they bring to the organization, and their vision for strengthening support, advancing research, and building an even stronger community together. https://www.curectnnb1.org/ #raredisease #syndrome

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  Episode #37

  Diana O'Mara - Fundraising for the Future of CTNNB1

  Jul 1, 202632 minS2

  In this episode, Toni talks with Diana O'Mara about how her desire to make a difference has grown into an incredible annual fundraising event. Diana shares the inspiration behind the fundraiser, practical tips for families interested in organizing their own events, and the impact that coming together can have—not only on research, but on the entire CTNNB1 community. This conversation provides hope, practical ideas and a reminder that every effort, big or small, helps move us closer to a cure. https://www.curectnnb1.org/ #raredisease #syndrome

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  Episode #36

  Estate Planning for CTNNB1 Families with Brenton McWilliams

  Jun 1, 202650 minS2

  In this episode, host Toni Paes talks with estate planning attorney and CTNNB1 parent Brenton McWilliams about how families can begin planning for the future of their children with special needs. In this reassuring and practical conversation, they discuss where families should start, how to avoid common mistakes, and why having something in place is far better than waiting for the “perfect” plan. Whether you are just beginning your journey or have been putting these conversations off for years, this episode offers practical guidance, encouragement, and peace of mind for CTNNB1 families planning beyond their lifetime. https://brentonmcwilliams.com SKDEAS Education Series: Beyond Your Lifetime: Estate Planning for Special Needs Parents/Caregivers https://www.curectnnb1.org/ #raredisease #syndrome

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