CASK Research

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Raising awareness and funding vital research into the CASK gene and its associated disorders.

CASK Research UK is the only charity in the UK supporting families with CASK related disorders, working with clinicians and universities and funding research into the CASK gene, its disorders and symptoms.

17/10/2026

Our incredible children go through so much in their lives living with a CASK mutation. To have extra pain and challenges added to their burden is unthinkable. But today our community is grappling with the knowledge that one of warriors is fighting the fight of her life.

Saylor is in a critical condition in hospital after being injured in the school shooting in Oregon earlier this week.

To support the family in their time of need please consider contributing to their GoFundMe. No family should have to be worrying about finances when dealing with what Saylor's family are facing right now.

https://gofund.me/7ab06586b. (Link in bio)

Thank you in advance for helping one of our family ♥️.

16/10/2026

Thank you to Team Novium who are running for on Sunday at the

If you'd like to donate and support please see their Just Giving page: https://www.justgiving.com/page/noviun-cask?utm_medium=FR&utm_source=WA

The majority of our funds come from fundraisers just like this one so every penny really does make a difference.

06/10/2026

Please watch this beautiful and emotive video from our good friend and colleague Giovi Moschoudis. Her dedication and passion inspired the creation of CASK Research, giving our founder the initial hope and courage to start a charity. We are proud that our two organisations work in harmony rather than competition, and provide solidarity, opportunities and resources to one another. Together we have definitely moved CASK research further than we could ever have imagined ♥️.

04/10/2026

🎂 Want to make your October birthday extra meaningful? 💙

If you have a birthday coming up, why not ask your friends and family to donate to CASK Research instead of buying you a gift?

Setting up a Facebook Birthday Fundraiser is simple. Here’s how:

1️⃣ Go to Facebook
Log into your Facebook account and look for the option to create a Birthday Fundraiser. You may receive a birthday fundraising prompt from Facebook, or you can find the Fundraisers section through Facebook’s menu.

2️⃣ Choose CASK Research
When asked who you would like to raise money for, search for CASK Research.

3️⃣ Set your fundraising goal
Enter the amount you’d like to aim for. Don’t worry if you’re not sure how much to choose — every donation, large or small, can make a difference.

4️⃣ Tell your friends why you’ve chosen CASK Research (scroll down from £ amount)
Facebook will give you some suggested wording, but it really helps if you can personalise your message - tell people why supporting CASK Research matters to you.

5️⃣ Add a photo and create your fundraiser
Choose a suitable cover photo, check your details and click Create.

6️⃣ Share, share, share! 🎉
Once your fundraiser is live, share it with your friends and family. You can also post reminders during your birthday month and thank people who donate.

💙 And that’s it!
Your birthday can help support research, awareness and hope for families affected by CASK-related conditions.

02/10/2026

🎂 Got a birthday coming up this month? Why not make your special day count? 💙

Instead of gifts, consider setting up a Facebook for CASK Research and ask your friends and family to support our work.

Every donation can help us continue funding research and supporting progress for families affected by rare conditions.

🎁 Your birthday could give the gift of hope, research and a b

Keep an eye out here over the next few days for a step-by-step guide on how to set up your fundraiser 👀 and drop us a message if you need any help.

Thank you for helping us make a difference! 💙

01/10/2026

Hi 👋 My name's Aria - I'm 10 years old and from Virginia, USA 🇺🇸

I was diagnosed with MICPCH at the age of 1.

👫My favourite people are my parents, because they make me feel so loved 💞 and always go above and beyond to advocate for me 🤩

🗻Two challenges I overcome daily include trying to learn to walk and re-learning how to bare weight.

My current skills include navigating a tablet 📲like it’s no one’s business, it's my favourite toy! And I push through all my obstacles with a smile on my face 😃

My biggest struggle is not being able to communicate my wants and needs or my pain, but Mommy and Daddy are very good at knowing what I need.

👩‍⚕️My current therapies include: physical therapy, aquatic therapy, occupational therapy and speech therapy.

3️⃣things I enjoy the most are:
👨‍👩‍👧 My family
🎶Music
🎓School

30/09/2026

💛 Today is a day to recognise the children and adults living with microcephaly, and the families whose support and love is so essential.

For many families in our CASK community, microcephaly is one of the most visible parts of a much bigger story.

MICPCH, which stands for Microcephaly with Pontine and Cerebellar Hypoplasia, is the most common CASK-related disorder. Behind those words are children who laugh, love, communicate, surprise us, challenge us and bring enormous joy to the people around them.

Awareness is about more than understanding a smaller head circumference. It is about recognising the complex needs that can come with differences in brain development, supporting families to understand their child's condition, and driving research towards better treatments and, ultimately, cures.

Today let's celebrate every person living with microcephaly — including our wonderful CASK community. 💛

28/09/2026

RARE-X hosts the largest ongoing natural history into CASK disorders.

🌱 166 and growing!

👉 Register now and join the families who have chosen to make a difference.

Now available in multiple languages.

Soon to be combined with your data from Citizen to create a comprehensive dataset to get us to clinical trials and beyond ✈️.

🙏 All parents or caregivers have to do is answer simple survey questions.

If you are registered already then THANK YOU and please don't forget to log on and update surveys!

https://rare-x.org/cask/

Citizen Health | Ari

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Address

Rowlands Castle

Website

https://caskresearch.org/

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