Amyloidosis UK

06/08/2026

Your Word of the Day is…

Axonopathy

Axons are the long, slender fibres that carry signals between your nerve cells and the rest of your body. Axonopathy is when those fibres are injured or begin to break down, and the messages that your nervous system relies on (telling your muscles to move, your organs to function, etc) can slow, distort, or stop reaching their destination altogether.

In amyloidosis, this can happen when amyloid deposits press on or infiltrate the nerves directly. It helps explain many of the sensory and physical symptoms that can feel so unsettling and hard to describe. Axonopathy is the fundamental neurological hallmark of ATTRv-PN.

05/08/2026

Following several months of amazing challenges to raise awareness of amyloidosis and funds for our charity, this will be the last update from Team Tett for a while and it is a very positive one to finish on!

“Penny absolutely smashed her triathlon! She gave it her absolute all from start to finish, showing incredible grit, energy, and determination through every single phase of the race. Cheered on loudly by family every step of the way, Team Tett could not be prouder of her massive achievement. All of her dedicated training hours really shone through on the course, proving just how hard she has worked to prepare. Fantastic job, Penny! 🏊‍♀️🚴‍♀️🏃‍♀️🏅”

We’re so very grateful to the whole Tett family for all they’ve done, it has been an extraordinary effort. On behalf of all of us here at Amyloidosis UK along with the entire amyloidosis community across the country, thank you so much. ❤️

You can still show your support for Team Tett via their JustGiving page:
https://www.justgiving.com/page/john-tett

31/07/2026

Team Tett are going for it again! Here’s the latest challenge, this time from John’s granddaughter Penny:

“Penny is taking on her very first-ever triathlon! 🏊‍♀️🚴‍♀️🏃‍♀️ On Saturday 1st August at King Edward's School Birmingham, she will be tackling: 150m Swim, 4k Bike, 2.5k Run. One challenge, one cause, all to raise vital awareness and patient support for Amyloidosis UK for Grandad John Tett. Team Tett is so proud of her taking on this huge challenge and cheering her on every step of the way! ❤️”

You can still follow and support Team Tett’s JustGiving fundraiser here:
https://www.justgiving.com/page/john-tett

28/07/2026

A HUGE congratulations to John Tett for completing his challenge of walking 600 km in 3 months to raise awareness of amyloidosis and funds for our charity! He even finished early having raised his target twice starting with 400 km.

For a 76 year old living with amyloidosis this is an incredible achievement.

The family have more challenges planned so stay tuned. You can follow & support Team Tett here: https://www.justgiving.com/page/john-tett

24/07/2026

Latest news from Team Tett’s extraordinary fundraising efforts:

"Phoebe absolutely smashed her 10 in 10 challenge on Saturday! 🏃‍♀️✨ Kicking off her first run at 6:00 AM and finishing the last at 3:00 PM, she powered through to cover a total distance of ~11.7 km at an average pace of ~5:35 /km. She is taking on these massive challenges to raise vital awareness and funds for amyloidosis for Grandad. Thank you all so much for your incredible support, cheering her on, and donating. Every bit helps Team Tett get closer to our goal! ❤️"

Follow and support Team Tett on their JustGiving page:
https://www.justgiving.com/page/john-tett

22/07/2026

On July 1st we joined the Parliamentary launch of "The Other Side of Heart Failure" — a vital report calling for better diagnosis and care for HFpEF and ATTR-CM patients.

Too many are still waiting for answers.

Read the full article here:

Amyloidosis UK at Parliament: backing better diagnosis and care for those living with unrecognised heart failure and ATTR-CM.

20/07/2026

The next Cardiac Amyloidosis (ATTR-CM) Online Support Group session will take place on Thursday 17 September, from 2 PM – 3:30 PM GMT+1. Come along and meet the community with Cardiomyopathy UK specialist nurse Jayne.

You can reserve a space via the link below:

Are you affected by Cardiac Amyloidosis (ATTR-CM)? Come along and meet the community with Cardiomyopathy UK specialist nurse Jayne.

17/07/2026

Latest from Team Tett: 🌟 Phoebe’s Incredible Challenge

"Our amazing 8-year-old Phoebe is taking on a massive mission for Team Tett this weekend: 10 x 1K runs across 10 hours! She is running at ten different local landmarks to raise vital awareness for Amyloidosis UK in honour of her grandad, John. Every stride raises awareness for a rare, life-altering condition and helps support early diagnosis.

Please show her your support and share her journey as she runs!"

You can follow Team Tett’s story and support their fundraiser on JustGiving: https://www.justgiving.com/page/john-tett

17/07/2026

Allan Grover is cycling from Birmingham to London in memory of his brother Charlie, who he sadly lost to amyloidosis last year, in order to raise money for our charitable work.

On behalf of all of us at Amyloidosis UK and the wider community: thank you so much Allan.

This is his story:

"On 10 December 2025, I lost my brother, Charles “Charlie” Grover, to Amyloidosis. It was the darkest day of my life.

Charlie was far more than my brother – he was my best friend. He was the person I could call at any hour, day or night, and know without question that he would be there for me. His kindness, loyalty, and unwavering support shaped who I am, and I will carry his memory with me for the rest of my life.

Last year, Charlie and I planned a bike ride together as an opportunity to escape the pressures of everyday life, spend time together, and clear our minds. For Charlie, a dedicated paramedic serving the Coventry community, it was also a chance to step away from the challenges that came with caring for others every day.

The route takes us from Birmingham to London along the Grand Union Canal, passing through Northamptonshire, where we grew up, and Hertfordshire, where so many family and friends reside, before finishing in a city that we both loved to visit whenever we could.

Although Charlie can no longer make this journey beside me, I am determined to complete the ride in his memory. I will do so using his bike and equipment as a tribute to his love of the outdoors and the adventurous spirit that defined him. Every mile will be ridden with Charlie in my thoughts and in my heart, and I know he'll be beside me.

I am undertaking this challenge to raise funds for Amyloidosis UK, a charity dedicated to supporting people affected by this rare and often overlooked disease. Amyloidosis can be difficult to diagnose and devastating for those living with it and their families. Through patient resources, practical advice, and emotional support, Amyloidosis UK helps improve the lives of people facing this condition while raising awareness of the challenges it presents.

If you are able to support this cause, your donation will help honour Charlie’s memory and assist others affected by Amyloidosis. Thank you for helping me turn this deeply personal journey into something positive for those who need it most."

Follow Allan’s story and support his fundraiser on JustGiving:
https://www.justgiving.com/page/charlie-grover-memorial-ride

Help Allan Grover raise money to support Amyloidosis UK

14/07/2026

Our trustee Julian Macleod shares his experiences of how heatwaves affect his heart condition and offers some sound advice for other heart patients.