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/
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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/
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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/
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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/
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Surviving the Season: Holiday Stress, Support, and Strength in the CTNNB1 Community

In this episode, Toni sits down with licensed clinical social worker and CTNNB1 mom, Stephanie Babcock to talk about her family’s diagnosis journey, early intervention, and life with her son Jack. Stephanie shares practical, compassionate strategies for managing stress during the holidays, explains the “feelings thermometer,” and offers a look inside the first CTNNB1 caregiver support group series. This heartfelt conversation reminds every caregiver that they are capable, resilient, and not alone.

https://www.curectnnb1.org/
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In this inspiring episode, host Toni Paes sits down with Jana Brown, mom to 29-year-old Jared —one of the oldest known individuals living with CTNNB1 syndrome. Jana shares her family’s decades-long journey from early misdiagnoses to finally finding answers, the power of persistence, and the lessons learned along the way. From the impact of deep brain stimulation and service dogs to the importance of advocating for your child and yourself, Jana’s story is filled with resilience, humor, and heart. Whether you’re a newly diagnosed family or a long-time member of the CTNNB1 community, this conversation is a powerful reminder that, as Jana’s mother once said, “They’re the same child they were before the diagnosis.”

https://www.curectnnb1.org/
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In this episode of the CTNNB1 Connect & Cure podcast, host Toni Paes welcomes back Fraser Bridgeman to delve into discussions about Methylene Blue and its potential benefits for individuals with CTNNB1-related conditions. Fraser shares insights from her personal experience as a parent and Integrative Health Practitioner, highlighting how various therapies, including red light therapy and supplements, can support mitochondrial function and alleviate some symptoms. The conversation also touches on crucial topics such as managing constipation and digestive issues, advocating for children's health, and the importance of personalized approaches. Parents are encouraged to explore these strategies while working closely with their healthcare providers to find the best solutions for their unique circumstances.

https://www.curectnnb1.org/
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President of CTNNB1 Connect & Cure, Emily Amerson and Toni sat down to discuss all the details of the 2025 CTNNB1 Connect & Cure Conference in Boston, Massachusetts happening on July 10 - 12. Listen in to hear all the information on what to expect at the conference. They discuss the agenda, childcare, activities, meals, research opportunities and where to get more information. 

Conference Website:

2025 CTNNB1 Conference – CTNNB1 Connect & Cure

Research Website:

Participate in Research – CTNNB1 Connect & Cure

Natural History Study Questions:

[email protected]

https://www.curectnnb1.org/
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Welcome Crawford McWilliams, our new CTNNB1 Connect & Cure Director of Fundraising. In this episode we get to know Crawford and her family, including her dragonfly Shreve. We discuss her fundraising efforts so far with CTNNB1, as well as some great ideas she has for future endeavors. 

https://www.curectnnb1.org/
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Megan Stanley is a Pediatric Speech and Language Pathologist, as well as mom to dragonfly Lilliana. With her unique perspective as both a clinician and a parent, Megan brings a heartfelt and informed voice to our community.  In this episode, she shares her family’s journey with CTNNB1, and how her professional background in speech therapy has shaped her approach to care and advocacy. 

[email protected]

https://youtu.be/b8lCCPP_s1Y?si=eURpndBKux_zuIu1

https://www.curectnnb1.org/
#raredisease
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