Muscular Dystrophy UK is holding an information and support day in February 2018 for families from South Asian backgrounds in the West Midlands who are affected by muscle-wasting conditions.
Sanah Rauf (pictured above with her family at a Muscular Dystrophy UK event) from Wolverhampton, who has spinal muscular atrophy (SMA), is one of the three women who are the driving force behind this event. She writes about her experience of Muscular Dystrophy UK events and the West Midlands family support and information day below.
Both myself and my sister have a muscle-wasting condition and our family has really benefited from attending Muscular Dystrophy UK’s events.
The West Midlands family support and information day is an opportunity to bring together families affected by muscle-wasting conditions and show them they are not alone. Everybody is welcoming and friendly at Muscular Dystrophy UK’s events and make a real effort to put you at ease.
Having a place where families and individuals can meet other people from similar backgrounds who have had the same experiences is important when you have a rare condition. I’ve really enjoyed meeting other young people and sharing experiences about living life with a muscle-wasting condition.
Attending this event will also be a great way to find out more about the support and opportunities Muscular Dystrophy UK offers such as joining the Trailblazers national network of young disabled people.
The event will:
- Offer an opportunity for families affected by muscle-wasting conditions to share their experiences
- Provide families with information about the support the charity provides and how to access local resources
- Help break down barriers that may prevent some families getting the best support available
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 on 0207 803 4826 or via email at firstname.lastname@example.org