Going the extra mile

https://www.justgiving.com/fundraising/russell-wright1 Russ has now raised ¬£2036! Here is Bertie’s friend Freddie with his dad, Russell Wright. Today, Russ is taking on the legendary Ironman challenge to help fund a cure for Bertie (sponsor link above). He is undertaking a 2.4miles in open water at Pennington Flash; a 112 mile cycle and then a 26.2 mile […]

Nordic mile

Bertie’s Grandma, Joan Parkinson, is busy organising our first Move a Mile for Muscles event to support research into a cure for muscular dystrophy. Joan and friends, including Isabel¬†(pictured), will be nordic walking a mile of beautiful St.Annes Beach in Lancashire this spring (May 4th).   You can join an existing Move a Mile event […]

Funding vital research

Bertie’s Buccaneers is a fundraising community and in particular a Family Fund for Muscular Dystrophy UK. Family Funds like ours together raise vital funds for groundbreaking research into Bertie’s condition. We are currently awaiting the final report on Prof. Muntoni’s recent project. Prof. Muntoni is now one of Bertie’s consultants at Great Ormond Street. Ullrich […]

Where your money goes!

Facilitating clinical trials for collagen VI-related conditions Here is just one of the vital projects into Bertie’s condition. It is being undertaken by Prof. Volker Straub at Newcastle (who diagnosed Bertie in 2014). This research is funded by the Family Funds for Muscular Dystrophy UK (MDUK). We are very proud to be making a difference. […]

Bertie’s first IronMan legend is Russell Wright!

Courage is a heart word. We have a very special Team Bertie event taking place this year. Russell Wright is Bertie’s very own IRONMAN! It is very overwhelming for us. If you don’t know what this involves, watch this video: This July Russell will undertake the gruelling 2.4 mile swim [that’s 152 lengths of a […]

“What is wrong with Bertie?” Rare Disease Day, 2017

We are often asked to explain Bertie’s condition. This is tough because it is complicated. However, as it is Rare Disease Day, here goes: One of Bertie’s genes is faulty, specifically a collagen VI gene. In his case he didn’t inherit a faulty gene, although you can. It just went askew and created an error […]

Life is better off-road!

We do everything we can to give Bertie a great childhood that is full of adventure but there is no avoiding that it is getting MUCH harder in his regular NHS chair as he grows heavier. The Ottobock is a fantastic chair and we love it but it is heavy and like most regular wheelchairs […]