Ann’s stepdaughter, Sarah, was told she lived with probable limb girdle muscular dystrophy at the age of 16. Research funding helped her get a definitive diagnosis 11 years later as limb-girdle muscular dystrophy 2A (LGMD2A, which is now known as LGMDR1).
Seeing Sarah overcome challenges and adapt to live with her condition has motivated Ann to fundraise for Muscular Dystrophy UK (MDUK) in the hope that it will help find a way of curing or slowing the progression of the condition.
Living with muscular dystrophy
For Sarah, living with LGMD means that “daily life is challenging.” She explains, “as you go about your daily life you will often do things without even thinking about it – things like getting out of bed, making a cuppa, getting dressed… I know I used to take these things for granted.
“As time goes on, and my condition progresses, these things require more thought and become more of an effort. For example, just to get out of bed, I need to make sure I am in the correct position to allow me to sit up, that the sling is within reach, and that the hoist controls are charged and to hand. But I also need to consider what if these things aren't in place, and I need help.”
Feeling motivated
Ann wanted to do something for MDUK because Sarah has received lots of support, which she says “helped her to lead an independent life the best way she can.” She explains, “MDUK not only fund research into treatments, but also facilitate various events for families, carers and individuals, provide advocacy support, and connect people with specialist nurses, and physiotherapists, which have all helped Sarah over the years.”
Sarah reflects, “When I fell and broke my hip in 2013, I was in hospital facing a long period of bed rest as I was unable to put weight on my right leg. This was one of the scariest times I have experienced, I was convinced I would never walk again and felt like I had no-one to turn to for help.
“I reached out to MDUK and within 24 hours I had a visit from a MDUK-funded specialist nurse who reassured me and helped with arrangements to get the support I needed to maintain my mobility and independence. I am happy to say eight weeks later I was able to walk out of the hospital with a little support from my two crutches.
I think it is fantastic that Ann is fundraising for MDUK, I admire her creativity and enthusiasm when coming up with new ideas!
“Without people like Ann fundraising for MDUK, the research projects that lead to clinical trials and treatments would not be possible and the support services, such as care advisors and specialist health professionals, funded by MDUK would not exist.”
Getting involved in local fundraising
Ann and her friend and fellow volunteer, Sharron, started raising money by organising charity collections in local supermarkets. They have also joined several car boot sales over the last few months, with all proceeds going to MDUK.
On Thursday 3 November, they will be participating in Bake a Difference, MDUK’s national cake sale event by holding a coffee and cake event in the local hospital where Ann works.
Ann has even got Sarah’s dad involved in fundraising.
“Next year, my husband will be doing a sponsored wing walk, which involves climbing onto the wing of a small plane, in aid of MDUK. He mentioned once that he wouldn’t mind doing one for the charity. So, for his 70th birthday, his daughters and I bought him a gift card to do it. He really didn’t expect that! But he says he’s looking forward to doing it next spring to raise funds for MDUK.”
“Volunteering has given me a sense of satisfaction”
Ann says she feels positive knowing that she’s helping to raise money for such a worthwhile cause.
“I have a bit more time now that I’m semi-retired, so Sharron and I are always looking at different ways we can raise money each month. Our main aim is to make a difference, however big or small, by raising money for research and increasing awareness of muscular dystrophy.
“We encourage everyone to join our team and start a new venture volunteering. You will be surprised at what ideas you may have for fundraising and what you can achieve in aid of the charity.”
Volunteering can be a great way to build connections within your local community. To find out more about how you can join our team, visit our Volunteering page. To support Ann's fundraising group visit their JustGiving Page.