“I always keep my alert card with me so I’ve got it to hand if I’m in an emergency. With the best will in the world most doctors don’t understand muscular dystrophy and if they don’t know they could do more harm trying to treat me."
So far Muscular Dystrophy UK have sent out over 7,000 condition-specific alert cards, which have helped individuals and families, affected by muscle-wasting conditions receive better healthcare in emergency situations. This includes Sarah Rose who has congenital muscular dystrophy (pictured and quoted) and recently ordered an alert card.
Read more on how the alert cards are supporting people to receive better care and how to order yours today - ... See MoreSee Less
In the past 18 months, Muscular Dystrophy UK has produced 11 condition-specific alert cards to help ensure people with muscle-wasting conditions are able to receive the best healthcare possible in em...
"Losing hope isn’t an option… Our scientists have the skill, our doctors have the faith and our children have the valour to lift our community from certain defeat by Duchenne. You have the power to help us and the potential to save a generation. Please do the right thing."
Claire O’Hanlon’s son Luke (pictured, right, with his cousin, James) has Duchenne. Claire was in the US this week to show her support and urge approval of exon-skipping drug, eteplirsen. Read Claire’s blog on our website, appealing to the Food and Drug Administration to give the treatment the green light. ... See MoreSee Less
I shall be running this weekend for MDUK . 5K Sunday and Half Marathon Monday. Why? Because 2 of my brothers have Limb Gurdle Muscular Dystrophy and in memory of Charlotte Louise Adkins. My brother Martin Hywood raises great awareness with his #Moveamileformuscles challenges.This weekend is my challenge. Wish me luck! Thanks x ... See MoreSee Less
Want to find out more on exon-skipping? Then join our online Q&A with Professor Francesco Muntoni on 10 May, which we’re running as part of our new Duchenne Dialogue series. We’ll also be giving you the chance to quiz other leading scientists, including Professor Dame Kay Davies and Professor George Dickson. Don’t miss it! ... See MoreSee Less
On 15 April, families learned the brilliant news that the National Institute for Health and Care Excellence (NICE) is recommending Duchenne muscular dystrophy treatment, Translarna, for NHS England fu...