The West Midlands Family Support Group will be launched with Muscular Dystrophy UK to help families learn how to get access to vital support. It will also help to break down some of the language and cultural barriers that may prevent them from accessing services and will meet for the first time on Saturday 24 February*.
Naima Ali-Khan (36) from Coventry, Sanah Rauf (21) from Wolverhampton and Jaspal Mann (41) from Coventry all have first-hand experience of the life-changing impact of muscular dystrophy and were the driving force behind the group. They became friends after meeting at other Muscular Dystrophy UK events and decided to use their experience to support other families in a similar situation.
Naima, a student nurse and Muscular Dystrophy UK ambassador, whose two teenage daughters have an ultra-rare condition called SEPN1-related myopathy1, said:
“Living with muscular dystrophy is fraught with challenges. Knowing where to start and where to get the right information and support is important in successfully managing these conditions. I want to use my experience to help other families out there who are living with the overwhelming impact of muscular dystrophy. Meeting others with a shared experience gives you a powerful sense of community.”
Jaspal, whose son Kirath (8) has Duchenne muscular dystrophy2, said:
“When Kirath was diagnosed just before his 4th birthday, my world fell apart. Duchenne is a particularly cruel condition and hearing that your son’s life is going to change forever is completely overwhelming. Knowing where to go to for support is crucial for families who have to live with the consequences of muscular dystrophy. I hope that the families attending the event will be able to draw strength from each other.”
Sanah, a student at Dudley College, who along with her sister has Spinal Muscular Atrophy Type 33, said:
“Muscular dystrophy is a devastating condition and impacts your everyday life. The event is about bringing people together and creating a community. I hope that by sharing my experience of living with muscular dystrophy, other families will see that they are not alone, as there is help out there for them.”
Around 4,000 people from the South Asian community in England and Wales have a neuromuscular condition, such as muscular dystrophy, and up to 600 people are affected in the West Midlands. Neuromuscular conditions cause muscles to weaken and waste over time, leading to increasingly severe disability. There is no cure, and few treatment options, cutting lives short.
Bobby Ancil, Senior Neuromuscular Outreach Manager at Muscular Dystrophy UK, said:
“We know how precious time is for people with muscular dystrophy. It’s a devastating condition, with families often feeling overwhelmed and isolated if they don’t know where to turn for help.
“Being able to share experiences with others can be both comforting and empowering. The event will allow families to share advice on anything from finding accessible accommodation to accessing local care and health services.”
Muscular Dystrophy UK has been supporting South Asian families affected by muscular dystrophy through the Yorkshire Neuromuscular Awaaz Forum. In 2014, the charity teamed up with Leeds General Infirmary Neuromuscular Service and two mothers from West Yorkshire, whose sons have Duchenne muscular dystrophy, to form the group. Meeting regularly in Bradford, the group brings families affected by muscular dystrophy together to support each other.
*The event will be held at the Holiday Inn Express Birmingham NEC, 1-3pm on Saturday 24 February 2018. To book your place, contact David Stephenson on
0207 803 4826 or via email d.stephenson@musculardystrophyuk.org
