Lovely Little Lowie

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06/07/2026

💙 We want to introduce you to Lowie, the son of Jodie, one of our practitioners at Carmenta Life.

The day before Lowie turned 3 he was diagnosed with CTNNB1 syndrome, a rare genetic condition affecting brain development, movement, speech and learning. As a family, they have faced this with extraordinary courage and love.

There is genuinely positive news - the Gene Replacement Therapy trial for CTNNB1 is showing real promise. But to build on this progress, funding is urgently needed to manufacture the therapy and open additional clinical trial sites, so that more children around the world, including Lowie, can access it.

Parents are leading this fight, because rare conditions like this simply don't attract the investment they deserve. Every step forward has been made possible by people who cared enough to act.

We are sharing this because we believe in community, and because one of our own needs us right now. To help raise awareness and funds, we will be running a 7-day Gratitude Challenge on our Instagram and pages from Monday 6th July. Donations for participation would be gratefully received. Every penny and every share brings Lowie, and children like him, closer to life-changing treatment. 🙏

Thank you for reading and supporting. Link to the fundraiser is in our bio and post comments. Can you help?

We have had an inspiring few days in Barcelona at the 4th Annual CTNNB1 Conference. It was a privilege to connect with f...
24/06/2026

We have had an inspiring few days in Barcelona at the 4th Annual CTNNB1 Conference.

It was a privilege to connect with families, researchers, clinicians and professionals from around the world who are all working towards a better understanding of CTNNB1 syndrome and improving the lives of those affected.
Having first attended the conference last year, we can't quite believe that the first gene replacement therapy clinical trial has already started. It's incredibly encouraging to hear the early positive updates being shared and to see how quickly research is progressing.

We also took part in the CTNNB1 Natural History Study. Gathering data from families is so important, as it helps researchers better understand the lived experiences, strengths and support needs of children with CTNNB1 syndrome, paving the way for future research and, hopefully, future treatments.

As parents of a child with CTNNB1 syndrome, there is something incredibly powerful about being surrounded by families who truly understand the journey. We left Barcelona feeling hopeful, connected and encouraged by the progress being made.
A huge thank you to everyone who made the conference such a welcoming and inspiring event, and especially to the CTNNB1 Foundation and Asociación CTNNB1 España. Together, we're moving research forward and making a difference for our children.

🎉 A historic milestone for the CTNNB1 community 🎉As this year draws to a close and Christmas lights begin to shine, we w...
23/12/2025

🎉 A historic milestone for the CTNNB1 community 🎉

As this year draws to a close and Christmas lights begin to shine, we want to pause and say the biggest thank you to the CTNNB1 Foundation.

The first CTNNB1 gene replacement therapy trial has officially begun. This represents years of research, collaboration, and unwavering advocacy, opening a new chapter of possibility for individuals and families affected by CTNNB1-related conditions. For so many families, this milestone represents more than science or research - it represents hope, belief, and the possibility of a brighter future for our children.

While this is just the beginning of the journey, it’s a powerful step forward and a reminder of what’s possible when science, dedication, love and community come together. Here’s to progress, hope, and the future ahead.

A wonderfully festive wreath making workshop hosted by the wonderful Violet and Coral for Lovely_Little_Lowie 💕So much c...
22/12/2025

A wonderfully festive wreath making workshop hosted by the wonderful Violet and Coral for Lovely_Little_Lowie 💕
So much creativity, laughter, and beautifully handmade wreaths filled the space. Each one was unique and made with so much care. A huge thank you to everyone who joined and made the evening so special, and a huge thank you to Violet for her floristry flair!

A lovely coffee morning arranged and hosted by Lowie's wonderful grandparents has made a brilliant contribution to our f...
23/10/2025

A lovely coffee morning arranged and hosted by Lowie's wonderful grandparents has made a brilliant contribution to our fundraising. Thank you so much all who helped and joined! https://www.gofundme.com/f/only-a-gene-away

Autumn term is coming to a close and we have definitely been busy since September. Two consultant appointments at Great ...
23/10/2025

Autumn term is coming to a close and we have definitely been busy since September. Two consultant appointments at Great Ormond Street Hospital, one surgery under general anaesthetic, speech and language appointments, other health appointments, a birthday, and lots of fun in between. We have also managed to raise more funds for CTNNB1 Foundation through overwhelming generosity and support from individual donations from our family and friends, two non-uniform days held by our lovely local schools, and a wonderful coffee morning.

Here we go! A delicious brunch at the Kings Arms Berkhamsted with my brilliant friend Lauren for a catch up and a social...
07/09/2025

Here we go! A delicious brunch at the Kings Arms Berkhamsted with my brilliant friend Lauren for a catch up and a social media masterclass to get set up with our fundraising campaign for Lovely Little Lowie.

https://www.gofundme.com/f/only-a-gene-away

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147 High Street
Berkhamsted
HP4 3HL

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