Gym members take on fitness challenge in aid of Ben vs Duchenne charity

A FUNDRAISING event held at a gym to support a young boy with a muscle-wasting condition raised more than £4,000.

AGV HQ, in Newtown Road, hosted the “Ben vs Duchenne 79 Team Challenge” on Sunday.

Dozens of members took part in a three-station fitness challenge throughout the day, with challenges focused on strength, endurance and heart.

The event was organised to raise money for Ben vs Duchenne, a charity set up by Alex and Lisa Clarke for their son, Ben, 12, who was diagnosed with Duchenne Muscular Dystrophy (DMD) in 2017.

DMD is a severe type of muscular dystrophy which only occurs in boys.

It is diagnosed in childhood and causes the muscles to gradually weaken. It is the most common form of muscular dystrophy, impacting one in 3,500 to 6,000.

The rep target for most exercises was 79, a nod to the number of exons in the dystrophin gene which produces the protein lacking in those living with DMD.

Mr Clarke, who has been a member of the gym for five years, said the physical challenge was intended to reflect that which Ben faces everyday living with the disease.

He attended the event with Ben, as well as Mrs Clarke and their other son, Zak, who sold cakes at the entrance to raise extra funds as part of his Mayor of Henley award, and raised £158.50.

Mr Clarke said: “The community here has been absolutely incredible since I joined five years ago.

“Every time I do something like this, I find it incredibly overwhelming because people open their hearts and really throw themselves into everything.

“They’re not coming here to drink a few beers and have fun, they’re here to really push themselves physically and work hard and they love it.

“I feel so blessed that there is an amazing community here in Henley and everyone looks out for their own.

“To be given the opportunity to do a fundraiser for Ben and to raise awareness of Duchenne is incredible.” Mr Clarke said that a portion of money raised through the charity goes to Duchenne UK — the leading charity for Duchenne which funds research, treatment and support, and some is put towards improvements for Ben’s quality of life.

This can include improvements to the home or purchasing a power chair which could support his independence. In 2023, the family adapted their Sonning Common home to make it more navigable for Ben when he needs to use an electric wheelchair.

This included widening the doorways and moving his bedroom to the ground floor.

Mr Clarke said: “You can’t plan to have Duchenne, you can’t plan financially around the impact it has.

“And within the world of disability and the world of extra need, unfortunately there is a lot of additional costs.

“Those are costs that are unforeseen, and that we really do need assistance with from the greater community.

“More than raising the money, I think is the fact that Duchenne is a rare disease not many have had heard of before we started doing the awareness and fundraising here at ADV. So the ability to be able to raise awareness of a condition that is rare is always a good thing.”

Gym owner Adam Lubbock said Mr Clarke was a “heartbeat” of the community and felt it was important to support him and his cause. The gym has previously supported the family with members by wearing red to mark World Duchenne Awareness Day on September 7.

He said: “We’ve always had quite a strong sense of responsibility to give back to the wider community and not just within the confines of our own.

“We’re all in fortunate positions to be able to give back in various ways. Clarkey is a heartbeat of our community, and the cause is very special to him and therefore it’s very special to us.”

Coach Will Turville said: “As a community what we do here is far more than just fitness.

“Having someone like Alex who has been in our community now for years, doing something like this with him, putting in the effort to put it on, getting people to donate, just shows our commitment to him.”