Signs for Sutton

05/26/2026

Some facts about Ataxia Telangiectasia!

05/19/2026

A step in the right direction.

Share share share!

Good news! The FDA in America, has agreed to speed up its review process for Intrabio’s AQNEURSA treatment for AT (also known as levacetylleucine and refers to the IB1001-303 trial) for AT. It means a decision about regulating the treatment in the US could come as soon as September 2026, and if approved, this could become the first ever treatment for AT. In the UK, the medicine still needs to go through the UK channels of approval but if it’s approved in the US first, it could help accelerate UK progress. Today represents an important and positive step forward in finding a treatment for AT.

Intrabio’s press release can be seen here https://atsociety.org.uk/intrabio/.

05/12/2026

Behind every diagnosis is a family who deserves to feel heard.

Last week Kay and Anne travelled to the South West to meet families where they feel most comfortable - at home.

Listening, guiding, advocating, and bringing together everyone involved in that child’s care - from schools to health teams - so families feel supported by one joined‑up network, not a maze of services.

This is another way your support helps us show up where we’re needed most. If you’d like to help us reach more families, please donate:

https://atsociety.org.uk/donate/

05/08/2026

Create, Connect, and Reset! Start your week with intention at Mental Health Mondays, a welcoming space designed to help you ease stress and bring more calm and balance into your life. Each session centers around hands-on self-care through simple, meaningful craft projects that give you a chance to slow down, be present, and create something just for you. Just as important, this is a time to connect. Share conversation, laughter, and support with others in a relaxed, judgment-free environment where everyone is welcome. You’ll leave not only with a creative project, but with a sense of connection and a refreshed mindset to carry into your week.

On May 11th, we will have an extra meaningful Mental Health Monday as we welcome our very special guest Hailey Martin, founder of Signs for Sutton, a nonprofit created in loving memory of her son, Joshua Sutton Scott Mathis, who bravely battled Ataxia Telangiectasia and T-Cell Leukemia. She will be sharing her story to raise awareness about these diseases and offer insight into her mission. Hailey will also answer questions and connect with attendees, bringing a message of strength, hope, and community.

05/05/2026

Good evening everyone!

Ataxia-Telangiectasia A-T Children's Project has created a page for donations to their project, on Joshua Sutton’s behalf. Check out the website! Donate what you can to help find a cure. Instead of donating to me, you can donate directly to them. Please share!

Signs for Sutton Signs for Sutton is a fundraiser aimed at raising funds and awareness to support much needed research for A-T (Ataxia-Telangiectasia) in memory of Sutton (who had A-T) and for all children and young adults living with A-T. A-T is a rare genetic disease that causes loss of muscle con...

05/02/2026

04/27/2026

2 year olds should not have to take Gabapentin.

A 2 year old should not have a G tube.

My 2 year old should not have spent half of his life in the hospital. But he did. That’s part of our reality.

My hope is no one else’s child ever has to face the same reality that we did.

Please do your due diligence and research cancer symptoms and screening for your child. Talk to your primary doctor and they can point you in the right direction. Cancer screening is important for everyone at any age.