Booking now open for free Information Day 24 March. The day will feature talks from internationally renowned researchers on five different conditions; congenital muscular dystrophy, spinal muscular atrophy, limb girdle muscular dystrophy, Duchenne muscular dystrophy and FSHD. You will also be able to join workshops focusing on clinical issues such as physiotherapy and surgery. To find out more about the event and the speakers attending please visit our event page. Spaces are limited so please register now to guarantee your place. >> bit.ly/2jHZ5Gc. ... See MoreSee Less
“As a young woman enjoying student life, my mind was more often focused on needing to use the bathroom and having to go home earlier than I'd like to use the bathroom rather than being able to enjoy myself." - Marni Smyth, Trailblazers Ambassador
Earlier this week, Jim Shannon MP secured a meeting for Trailblazers with the Minister for Communities and Local Government on the provision of accessible toilets. What are your experiences of accessing toilet facilities for people with disabilities?
“I think we need this Duchenne screening test – but let's make sure we have the right psychological support available to go alongside it."
What's your view on screening for Duchenne muscular dystrophy at birth? Head over to our website to read our report from the MDUK roundtable meeting on newborn screening for Duchenne, which heard from parents like Phillippa Farrant (pictured with her son, Dan). >> qoo.ly/dciux. ... See MoreSee Less
Participants wanted for a student research dissertation looking into the effect of Duchenne Muscular Dystrophy on the parents.
I am looking for fathers and/or single parents that would feel comfortable being interviewed about their experiences of being a carer to their son with Duchenne Muscular Dystrophy. This interview will investigate areas of your day to day life as a carer, your thoughts and feelings surrounding being a carer, your struggles as a carer and how you cope with your situation.
Not enough research has been published looking into how Duchenne Muscular Dystrophy has affected parents, the studies that do exist mainly focus on how mothers who are with their partners are affected, hence the reason for this study.
Interviews would typically take between 30 and 60 minutes, but may be longer or shorter depending on your responses to the answers.
Your data will be kept anonymous and if you decide to take part can withdraw from the study at any time where your data will be destroyed.
If you are interested in taking part please contact me and we can arrange a time and place for the interview
Miranda Dexter, Undergraduate Psychology Student, University of Chester email@example.com ... See MoreSee Less
Huge thanks to our corporate partner ING Bank and Smile with Shiv for presenting Muscular Dystrophy UK with a donation of £10,000 to mark the start of our second year of partnership.
ING got on board thanks to Smile with Shiv's founder Manoj Thakrar, a long term employee of the Dutch bank and dad of Shiv, a young boy diagnosed with Duchenne muscular dystrophy in 2014.
Since the beginning of the partnership, in 2015, ING has raised a staggering £80,000 through a variety of fundraising events. We are extremely thankful to everyone at ING for getting involved and making a massive difference to our work into research for Duchenne muscular dystrophy. ... See MoreSee Less