Below is a list of volunteers who have this experience and are here to provide you with support and advice. We will be adding more volunteers to this page once they have completed their training.
For more information or to get in touch with someone, please email email@example.com.
Claire O'Hanlon, from Dungannon
About me: My son has Duchenne muscular dystrophy. I enjoy family days out, the occasional theater night out, and writing.
Why I became a peer support volunteer: I come from a family with a long history of Duchenne. I lost my brother and 3 uncles to Duchenne and in 2012, both my son and my cousin’s little boy were both diagnosed with Duchenne. I wanted to become a Peer Support Volunteer because I have seen first-hand the lack of support for families after diagnosis. The post diagnosis period is a very scary time for families and this is even worse when they have never heard of the condition and are simply left to rely on ‘Google’ for information. I found great value in speaking with other families following diagnosis and I would like to help other families in any way possible.
Top Tip: Don’t believe everything you read on Google.
Gerry Kelly, from Glasgow
About me: I am married, with two children, Sarah and Jonathan who has Duchenne muscular dystrophy. I like to socialise, good food, cooking and eating out. In my spare time I like to read, watch sport, particularly football, rugby and golf.
Why I became a peer support volunteer: Fundamentally I want to help people. I have raised money for the charity, and whilst that is rewarding, I feel that helping and mentoring peers is something more worthwhile. This is something that when we were diagnosed we struggled with but we were fortunate to have some family support. If we can help some parents who do not have as much support as I did, then we are making a significant difference.
Fun Fact: I once appeared on stage in a play at school with someone who became a bond villain!
Kathryn Newnham, from Surbiton
About me: I enjoy sport and anything outdoors, including walking the dog and camping with friends. The whole family enjoys music and we have just started taking the kids to a few concerts. I can also lose myself in a book very easily!
Why I became a peer support volunteer: Since two of our children were diagnosed with Muscular Dystrophy, talking to people has been critical for me. I would like to help someone else going through the same thing, even if it is simply being at the end of the phone when they need to talk.
Top tip: Planning for rest as well as activity is crucial! Try to experience everything that you are passionate about – even if that has to be done in a different way because of Muscular Dystrophy.
Sian Rixon, from Southampton
About me: My husband, Allan, and I have two children, Finn and Emmie. I work part time as an administrator, as well as having my own sewing business. I love being outdoors, cooking and crafting.
Why I became a peer support volunteer: Emmie was diagnosed with Congenital Myotonic Dystrophy shortly after her birth, following this my mum and myself were diagnosed with adult onset. Whilst it does not impact my everyday life I do have quite a few symptoms, my mum has since had heart surgery and of course, my daughter has daily challenges to overcome. Earlier this year, myself and three other families set up a family fund, Congenital Myotonic Dystrophy Fight Fund, with two primary aims – one to raise money for research and secondly to provide families with support into this rare condition.
Top Tip: speak up – don’t be afraid to question a doctor, you know your child best and if you have any concerns you should raise them.
Fun Fact: Day time TV is my guilty pleasure, fortunately I’m not at home that much to be able to indulge!
Tracey Abram, from Braintree
About me: I have an adult daughter with distal myopathy in both lower limbs, this has only come to light in the last 6 years. and identifying diagnosis has not been able to be made.
Why i became a peer support volunteer: I want to be able to help young adults to reach the services and have the knowledge they need. Young adults who have a diagnosis do struggle to get everything they are entitled to and linked up with services.
Hobbies / Interests: I am passionate about swimming and love the outdoor life. walking cycling and travelling, I have good background knowledge of health due to my work.
Fun Fact: I have climbed Kilimanjarro for Muscular Dystrophy UK in 2012 with my daughter and my husband proposed at the summit