This week Muscular Dystrophy UK is holding an information and support day for families from South Asian backgrounds in the West Midlands who are affected by muscle-wasting conditions.
Naima Ali-Khan (pictured left) is a student nurse and Muscular Dystrophy UK ambassador whose two teenage daughters have SEPN1-related myopathy. She is also one of the three women who are the driving force behind this event. Naima writes about her experience and why people should attend the West Midlands family support and information day below.
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.
Over 20 people affected by muscle-wasting conditions from South Asian backgrounds have already signed up for the event where we will:
- Offer an opportunity for families affected by muscle-wasting conditions to meet other people in similar circumstances
- Provide families with information about the support we provide and how to access local resources
- Enable attendees to decide how they want these meetings to develop and what the focus should be
This West Midlands family support and information day follows the success of the Yorkshire Neuromuscular Awaaz Forum which was set up in 2014 by Muscular Dystrophy UK and Leeds General Infirmary for Yorkshire families affected by muscle-wasting conditions.
The event at the Holiday Inn Express Birmingham NEC will be from 1pm-3pm on Saturday 24th February 2018 and will include refreshments.
If you would like to find out more about this event or Muscular Dystrophy UK’s other activities in the West Midlands then please get in touch with David Stephenson at firstname.lastname@example.org