Alex joins Action Duchenne family

A very warm welcome to the newest person to join our Action Duchenne family, Alex Berbank.

Having supported hundreds of people experiencing life-changing illness on critical care wards for the NHS, Alex joins our team as Outreach Officer.

Supporting Duchenne families

This new role forms a crucial part of our ‘All-through Support’ project, which recently received support and recognition by the National Lottery. Alex will be supporting newly diagnosed families, guiding them through their first year of diagnosis and beyond. He will also be offering help to families who are reaching out to Action Duchenne for the first time.

Alex will be instrumental in making sure all families receive Action Duchenne’s world-class support and will be working closely with the neuromuscular clinics across the UK to achieve this.

It gives me great pleasure to welcome Alex to our wonderful team. He brings valuable expertise, knowledge and understanding of the process Duchenne parents and carers experience when they receive this life-changing diagnosis. His drive to help others, and make a real difference to the children, young people and their families in our community is extremely powerful. I am looking forward to working closely with him to deliver our highest level of support to the families when they need it the most.

Florence Boulton, National Director

Hear from Alex

Before studying at University, I worked with vulnerable kids who struggled with mainstream education. I was part of a very small team that helped children and young people achieve their full potential, including getting as many GCSEs as possible. I helped the young people get industry recognised qualifications in media production, game development and trade skills. This helped them to get the jobs they wanted and reach their personal life goals. 

After a brilliant three years studying Sports Medicine and Physical Rehabilitation at St. Mary’s University I joined the NHS. In my first role I enabled adults of all ages with reduced mobility, to access the world around them. I saw many patients and people in our care start to start to feel isolated and withdrawn when they were faced with life changing conditions. For many, the situation is overwhelming and I supported people through their grieving process for the life they thought they would have. I believe that initial support is key to overcoming this, whether in the form of casual chats about our feelings or deeper conversations about the big questions we have. 

My career path changed beyond recognition during the Covid-19 pandemic. I moved onto working in critical care and high dependency Covid wards. I found great pride in being there and supporting patients and their families when they felt most isolated and alone. I supported people with illnesses brought on by Covid, which often manifested in cardiac, neuromuscular and respiratory problems. During physio sessions and time on the wards, I talked with patients about their future, their feelings and about any anticipated grief they were experiencing. These chats never made the pain go away but they did make getting through the next day / week / month easier for the people I was supporting. 

After I moved away from the Covid-19 wards I took the opportunity to work with Action Duchenne full-time as the Outreach Officer. This new role is a crucial part of our ‘All-through Support’ project, which is recognised and supported by the National Lottery. I am building connections between; the neuromuscular clinics, Duchenne families and Action Duchenne. If you are new to the Duchenne community, or are looking for support in your Duchenne journey, I will help guide you on your first year and beyond. 

Looking forward to meeting as many of you in person as possible. 

Alex Berbank

Outreach Officer

Action Duchenne

alex@actionduchenne.org

Find out more

• Contact Action Duchenne support team on 020 7250 8240
• Watch recordings from our newly diagnosed family information event
• Join a support event
• Sign up to receive Duchenne news