CTNNB1 Connect and Cure
autor: Annie
Najnowszy odcinek
Ashley Werths recap of her first CTNNB1 Connect & Cure conference in…
Ashley Werths recap of her first CTNNB1 Connect & Cure conference in…
O tym podcaście
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.
Odcinki
Najnowsze 20 z 41 odcinków
- Ashley Werths recap of her first CTNNB1 Connect & Cure conference in 2025 · 32 min · Sezon 2 Odcinek 40In 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…
- Forward Together - 2026 Conference Update with Emily Amerson · 28 min · Sezon 2 Odcinek 39In 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…
- Meet the Newest Board Members for CTNNB1 Connect & Cure · 43 min · Sezon 2 Odcinek 38In 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…
- Diana O'Mara - Fundraising for the Future of CTNNB1 · 32 min · Sezon 2 Odcinek 37In 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…
- Estate Planning for CTNNB1 Families with Brenton McWilliams · 50 min · Sezon 2 Odcinek 36In 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…
- Holiday Stress & Support with Stephanie Babcock · 54 minSurviving 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…
- A Lifetime of Love with Jana Brown · 49 minIn 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…
- Integrative Health with Fraser Bridgeman - Methylene Blue, Red Light Therapy, and Beyond · 35 minIn 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…
- 2025 Conference Update with Emily Amerson · 30 minPresident 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…
- Introducing Director of Fundraising Crawford McWilliams · 25 minWelcome 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…
- Speech Therapy with Megan Stanley · 50 minMegan 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…
- Intensive Therapy at Jd McCarty Center with Dan & Toni · 43 minBella recently completed a 3-week Intensive Therapy session at the JD McCarty Center in Norman, Oklahoma. Dan and Toni discuss the experience and what it was like for anyone else…
- ABA Therapy with Caitlin Powderly · 40 minCaitlin Powderly is a Board-Certified Behavior Analyst (BCBA) and mom to Tyler, who has CTNNB1 syndrome. She and I talked about how Tyler came into her life, and the impact that…
- NORD Breakthrough Summit Recap with Ashley Swift · 27 minAshley Swift is the Chief Communications Officer for CTNNB1 Connect & Cure, as well as mom to dragonfly Evelyn. In October of 2024, Ashley was able to attend the National…
- Life with Multiple Diagnosis · 48 minSo many of our kids have a common connection, CTNNB1, but many of our kids have more than just CTNNB1. I interview Kelley Merwin about her son's multiple diagnosis and what she…
- Thanksgiving Episode · 38 minAnnie, Dan and I were able to take a little time to catch up before the holidays start. We reflect on what makes Thanksgiving different with our CTNNB1 children and how we…
- Global Genes Week in RARE Recap with Ashley Hamic · 19 minEvery year Global Genes hosts a Week in RARE, which combines the RARE Health Equity Forum and RARE Advocacy Summit. This conference gathers and engage rare disease advocates and…
- IEPs with Keely Ward · 48 minMany of us with children in the US school system have probably heard the term IEP. This Individualized Education Program (IEP), regulated by the US Department of Education, is…
- Welcome to new host Dan Stevens and Toni Paes · 26 minWelcome back to the Connect and Cure Podcast! I’m thrilled to have you here today. Producing this podcast has been a deeply rewarding journey, however it’s a lot to do alone. To…
- CTNNB1 Sibshop with Abby Turnwald · 25 minShortly after Preston’s diagnosis I learned about Sibshops. Sibshops are in person or virtual events where special needs siblings will meet other sibs, have fun, laugh, talk…
