The search for a treatment for TAOK1-associated disorder will require resources greater than any single family can provide. That is why, alongside regular donations, we are planning fundraising campaigns — organized fundraising drives, each with a clearly defined goal, budget, and timeline. We want everyone who supports the foundation to know exactly what their money is working toward: a specific research project, a specific stage of building the patient registry, or a specific foundation initiative.
The strength of our community lies in its international character — and our campaigns will look exactly the same. Families, friends, and supporters of the foundation around the world will organize events in their own countries and cities: runs and sporting challenges, birthday fundraisers on social media, charity auctions, concerts, and events hosted by local communities, schools, and companies. Each of them, whatever its scale, feeds into the same shared goal. The experience of foundations working on other rare diseases shows that it is precisely such grassroots initiatives — multiplied by the number of countries and people involved — that build budgets capable of funding real science.
This is where you will find a calendar of events from around the world. We will publish all upcoming campaigns and events here — with the date, location, description, and information on how to join or support each one. We will fill in the calendar as the first events are announced; we are working on preparing them right now. More information coming soon.
Do you have an idea for your own event — a run, a birthday fundraiser, an event at your school, company, or in your neighborhood? Write to us. We will help you prepare it: we will share materials about the foundation and TAOK1-NDD, graphics and logos, and we will add your event to the calendar and promote it across our international community. No event is too small — each one brings us closer to a treatment, and along the way builds something just as valuable: awareness that TAOK1 exists.
This content is for informational purposes only and does not replace medical advice. Last updated: August 2026.