Fuel life‑changing advances for Timothy Syndrome and CACNA1C‑related disorders

Every gift helps open the door to faster diagnosis, meaningful support and breakthrough treatments for individuals living with CACNA1C-related disorders. These conditions are so rare, most people have never heard of them, yet so impactful, they shape every aspect of a person’s life.

These are not just cardiac conditions. Not just neurological. Not just psychiatric. CACNA1C-related disorders can affect the brain, heart, immune system, metabolism, muscles and more — often all at once. They are lifelong, complex and deeply misunderstood.

Families face an impossible burden: managing crisis-level symptoms while navigating a system that doesn’t yet understand their needs. In many cases, they’re doing this alone. But your support changes that.

Why your support matters

We have a rare opportunity to lead bold and lasting change. To build something that’s never existed before. But we need your support.

• Because we have a strategy – and it’s working. We’re leading a multi-pronged plan that includes real-world data, precision research, international clinical guidance and family-led advocacy. With your help, we’re moving from scattered effort to focused progress.
• Because there’s no safety net. Without dedicated clinical pathways, families are left to piece together care themselves. With your help, we’re building global resources that clinicians and families can rely on.
• Because research needs roots. Data is fragmented and underfunded. You help us grow the CACNA1C Community Registry — one piece of a broader research infrastructure including cellular modelling, variant analysis and therapeutic development.
• Because what we learn here matters far beyond rare disease. CACNA1C is also linked to major mental health conditions (e.g. schizophrenia, bipolar disorder and depression). When you support this work, you’re investing in discoveries that could impact millions of lives.
• Because without community, there is no progress. You help bring families, researchers and clinicians together — shaping a future where science is guided and informed by lived experience.
• Because everything is ready — except the funding. We have the partnerships. The roadmap. The global network. What we need now is the fuel to move faster.

“TSA gave us answers when no one else could. It connected us to hope, to experts, to each other.”

— Parent in the CACNA1C community

Choose the right way to give

Wherever you live, there’s a simple way to support this mission.

Global donors

Donate via PayPal or donate via JustGiving.

Accepted currencies:

• British pounds (GBP)
• US dollars (USD)
• Euros (EUR)
• Canadian dollars (CAD)
• Australian dollars (AUD)

You can also donate via GlobalGiving.

• Accepts international currencies
• Tax-deductible in UK and US
• Ideal for donors outside the US

Make your impact go further

Monthly donors are our steady partners in change. Your regular gift fuels consistent progress — not just responding to urgent needs, but shaping the long-term future of care and discovery.

Whether it’s £5, $20, or more, a monthly donation means:

• families get answers sooner
• researchers have the tools to act
• no one faces CACNA1C alone

You choose the amount. We’ll turn it into action.

Why TSA?

• Because we’re not filling a gap. We’re building the system.
• Because families and scientists deserve to work side-by-side.
• Because what’s rare to the world is everything to us.
• Because with you, the impossible becomes possible.

We are a registered UK charity and have achieved Equivalency Determination, confirming we meet the standards of a U.S. public charity. This enables U.S.-based foundations and donors to give with confidence and ensures our organisation meets high standards of governance and transparency. TSA is also proud to be a Chan Zuckerberg Initiative Rare As One Network member and part of a trusted global research ecosystem. We keep donors informed with regular impact updates — so you’ll always know what your gift is achieving.

With your help, we can rewrite the story for families affected by CACNA1C — from confusion and isolation to clarity, care and hope.

Join the journey. Fund the future.