The Charity aims to help all those aged 18+ with MD in the Midlands to actively manage their condition, maintain optimum mobility for as long as possible and stay independent.

Chief Executive Sarah Ann Moore said: “Although MD Support Centre is a small independent charity we have a big role to play as one of just two organisations nationwide providing long-term, regular physical therapies for adults with muscle-wasting diseases.

“It is an honour to be chosen by Coventry Lord Mayor Cllr Jaswant Singh Birdi as one of his charities and alongside joining Coventry and Warwickshire Chamber of Commerce, we hope to raise awareness about our essential services so we can support even more people in the future.”

Meeting demand

MD Support Centre has more than 575 service users from across the region, with around half coming from Coventry and Warwickshire. Most referrals come from hospital consultants and GPs as NHS therapies can be difficult to access and are often limited to six weeks.

The Charity never discharges a service user and its biggest challenge is meeting the high demand for its services. Looking ahead to the next decade, it plans to diversify its income streams and double its capacity to support people with MD in the Midlands and beyond.

MD is a rare genetic condition affecting 110,000 children and adults in the UK, with over 60 types and subtypes, and symptoms ranging from difficulty walking to compromised respiratory and cardiac function.

As Sarah explains: “MD is life-long and can be life-limiting. There is currently no cure and we often  hear of newly diagnosed people being told by health professionals there is little or nothing that can be done, a devastating diagnosis. MD is isolating and difficult to live with but our service supports physical and mental health, wellbeing and independence, to enable people with MD to live well.”

Hybrid service

The Charity delivers a hybrid service offering free online sessions and in-person therapies at its Coventry base and satellite clinics in Birmingham, Leicester and Tipton.

Online sessions include seated or standing exercise, Pilates, yoga, mindfulness and breathwork. There is also an online social group offering friendship and peer support.

A team of therapists, led by Clinical Services Manager Taher Dhuliawala, includes seven physiotherapists and two osteopaths. Their vital work provides regular treatment to prevent symptoms spiralling out of control, with the Charity’s 2022 Annual Service User Survey finding:

• 80% of respondents said the sessions kept them walking
• 84% found the therapies helped them to manage pain
• 80% had an improved their understanding of their condition
• 97% felt the support helped them avoid unplanned hospital admissions
• 96% said the support helped them to stay in work
• 100% agreed the Charity provided a community to be a part of.

Lorraine Howard has been attending the Coventry centre for more than eight years and explains: “My time there has always been enjoyable, not just from the physical aspect but socially too. I have full-time carers who accompany me and they also find the experience useful as they are able to relax whilst my physio Lynn works her magic on me. The centre is friendly and a lovely place to be for a few hours. I always look forward to going and I hope it stays open for many years to come.”

Find out more about MD Support Centre or if you would like to discuss partnering to support the Charity’s work, please contact CEO Sarah Ann Moore who would be delighted to hear from you.