{"id":1446,"date":"2026-06-14T21:29:15","date_gmt":"2026-06-14T21:29:15","guid":{"rendered":"https:\/\/curetaok1.org\/?page_id=1446"},"modified":"2026-08-14T21:11:07","modified_gmt":"2026-08-14T21:11:07","slug":"how-to-help","status":"publish","type":"page","link":"https:\/\/curetaok1.org\/?page_id=1446","title":{"rendered":"How to help"},"content":{"rendered":"\t\t
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<\/p>\n

In brief<\/h2>

Today, CureTAOK1 is a group of people – most of us parents of children with TAOK1-associated disorder – who have organized around two goals: finding a treatment, and making sure our children live the best lives possible in the meantime. We are not a large institution with a paid staff. We are families spread across the world, contributing the time, skills, and determination we have. That is precisely why help matters so much: every person who joins us genuinely expands what this community can do.<\/p>

You do not need to be a scientist or a doctor to make a difference. Below are the areas where help is needed most – if you see yourself in any of them, or in something we have not thought of yet, write to us at contact@curetaok1.org<\/a><\/strong>.<\/p>

Research into the disease, including its natural history<\/h3>

Everything begins with understanding. We are building a patient registry and preparing a natural history study – the systematic documentation of how TAOK1-NDD unfolds over time, which is the foundation for any future therapy. If you are a researcher, a clinician, a data specialist, or a student looking for a meaningful project; if you can help design surveys, manage data, or review literature – there is a place for you here. And if you are a parent of a child with TAOK1-NDD, the single most valuable contribution may be your family’s story and data, shared through the registry once it opens.<\/p>

The search for a treatment<\/h3>

Our ultimate goal is a causal therapy. Getting there means connecting with laboratories working on TAOK1 and related pathways, understanding the therapeutic approaches emerging for rare neurodevelopmental disorders, and building the scientific partnerships that will one day carry a treatment from an idea to a trial. If you work in genetics, neuroscience, drug development, or biotech – or simply know people who do – an introduction, a conversation, or an hour of your expertise can move us forward more than you might expect.<\/p>

Wellbeing of people with TAOK1 – here and now<\/h3>

A treatment is the destination, but our children are living their lives today. We want to gather and share what helps right now: experiences with therapies and rehabilitation, communication tools, diet, exercise, sleep, education, daily routines – the practical knowledge families accumulate and that no one should have to discover alone. If you are a therapist, an educator, a nutritionist, a physiotherapist, or a parent with experience worth passing on, you can help us turn scattered individual knowledge into resources available to every family.<\/p>

Fundraising<\/h3>

Research costs money, and for a disease this rare, that money will not come on its own – it starts with us. You can help by donating once the donation system opens, by organizing a fundraising event in your community (see our “Fundraising campaigns” page), by connecting us with companies and sponsors, or by helping us apply for grants. If you have experience in fundraising, grant writing, or nonprofit finance, your skills are among the most sought-after in our community.<\/p>

Advocacy and legislation in individual countries<\/h3>

The everyday reality of a family with TAOK1-NDD depends heavily on national systems: how disability is recognized, which therapies are reimbursed, what support schools provide. In many countries, rare disease families have rights they struggle to access – and laws that could serve them better. If you know your country’s healthcare, education, or legal system; if you have experience in patient advocacy or public affairs \u2014 you can help families navigate what exists today and push for what should exist tomorrow.<\/p>

And much more<\/h3>

The needs of a growing community change from month to month – and the best ideas often come from outside it. If you have skills, experience, contacts, or simply time and willingness that you feel could serve this cause, do not wait for us to list them here. Some of the most valuable help comes from people who offer something no one had thought to ask for. Even spreading the word that TAOK1 exists is a real contribution.<\/p>

Want to help? Write to us at contact@curetaok1.org<\/a>.<\/strong> Tell us who you are and what you would like to do – or just say hello, and we will find the right place for you together.<\/p>

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This content is for informational purposes only and does not replace medical advice. Last updated: August 2026.<\/u><\/b><\/p>

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