This blog is a space created for those affected by CACNA1C-related disorders, including Timothy Syndrome.
A place to come together to share your individual experiences. A space where you can tell your stories – whether that’s where it all began, what’s on your mind or even how your day went.
All emotions and feelings are welcome and valid here, you are truly free to express yourself. This is your space.
The power of community, storytelling and working together
Subtitles for this video are available in various languages.
Welcome to Beyond Genes
Hi there, and welcome to Beyond Genes! I’m super excited to have you here at the beginning of this journey. If you have found yourself here, let me introduce myself -…
When the diagnosis comes: A journey through shock, grief and hope
When you first get a rare genetic diagnosis for your child, it’s like the floor disappears beneath your feet. As a pediatric nurse for 20 years and a mom of…
Lee
When our son Lee was first diagnosed with Timothy Syndrome (TS) just after his 1st birthday in 2011, my husband and I felt so alone with the diagnosis. We quickly…
Connor
When Connor was born in 1993, Timothy syndrome did not exist. He came 5 weeks early through emergency c-section with webbed fingers and toes and a very prolonged QT interval.…
Bear
We picked the name Bearon to give our son a name that means “Young Warrior”, with the plan to nickname him Bear. My husband and I had so many dreams…
Ollie
Every parent loves to watch their child fly like a butterfly and discover the world. Although five-year-old Ollie’s variation of CACNA1C means he is developmentally one year old, he plays independently, attends…
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Share your story about life with CACNA1C
We welcome you to share your personal experience living with or caring for someone with a CACNA1C-related disorder. Your story can help others feel seen, supported, and connected.
Help us provide more support to our community
Your donations help us reach out to more families more often.
Your contribution will help:
- raise awareness to drive research and clinical development
- enhance scientific understanding
- reduce the isolation faced by families
With your help, treatment and a cure for future generations is closer to being found.
See other ways that you can support us.