3 yrs after our last face to face meeting it’s great to be with the Muscular Dystrophy UK Scottish Council today. Great to welcome new prospective members and to discuss priorities for people with muscle wasting conditions in Scotland. Lots of exciting thoughts to occupy the journey home!

Delighted to be invited to the JWMDRC LGMD Patient Day. Looking forward to talking about the support available from Muscular Dystrophy UK and to chatting with attendees. Great to be partnering with former colleague Jackie McGuigan!

Our agenda here in York starts at 10am and great to be grabbing a coffee and catching up with old and new friends first!

I’m so proud to be part of the Muscular Dystrophy UK team. Wonderful morning so far with members of our community and great to have so many of the team together in one place!

Great analogy from Jules Dymond of Welfare Benefits Unit that applying for PIP without the right information or support is like trying to write an A Level English essay without knowing what book it’s supposed to be on. Luckily this is something that Muscular Dystrophy UK can help you with.

Great to be using a venue for the Muscular Dystrophy UK Information Day in York that has a Changing Places UK toilet. Thank you for having us New Earswick Folk Hall. Obligatory team Changing Places ‘selfie’…

Today we’ve been busy typing up a storm to explain muscular dystrophy. Certain social media CEOs, take note... #ElonMusk #HalliThorleifsson Halli

Looking for financial support during the cost-of-living crisis? For a limited time, we will be offering cost-of-living grants to people living with muscle-wasting conditions. Applications are open from 27 March until 6 April. Find out more here: bit.ly/3YJ9X6f

Great to have arrived in Amsterdam to give a patient perspective on information about advanced therapies at the World Evidence, Pricing and Access Congress. I’ll be drawing on Muscular Dystrophy UK experience of being active on 11 treatment appraisals over past 4 years

Some great engagement from delegates today on the patient perspective. Interesting discussions about how you can quantify the benefit of treatments to caregivers. This came up in our successful fight for Translarna and looks set to come up with other treatments too.

Another day at #EPAconf and another banner stand… heading to sessions on early access to treatments for rare diseases

What a fantastic day spent with the MDUK community - listening, talking and learning. An amazing end to a busy week. Very proud of the Muscular Dystrophy UK team who pulled together and delivered such a great agenda.

Really enjoyed being with Sheonad Laidlaw and members of the Muscular Dystrophy UK Scottish Council in Glasgow this morning. Lots to think about on the train home and great to spend time with such a passionate part of our community.

I’m not the only one from the Muscular Dystrophy UK team out and about today. We were delighted to be invited to a the MD Support Centre open day today and Kyri is there to help mark their 10th anniversary and provide information and support to attendees.

Really excited to be in Manchester this morning for Muscular Dystrophy UK to talk to BBC Breakfast about Changing Places UK toilets and why their provision is so vital to some of our community

Consultations are underway around the closure of staffed ticket offices across the rail network. We know this is causing a lot of concern. Who you need to share your concerns with depends on the rail services you use. Take action at: transportforall.org.uk/campaign/ticke…

Join us for our in-person information day for adults living with a muscle-wasting or weakening condition in Northern Ireland: rb.gy/m3viu. We will cover a range of topics to help you live well. The event is free but spaces are limited!

📢 Join us for a focus group discussion on the importance of bone health and osteoporosis in adults with Duchenne muscular dystrophy alongside Dr Jarod Wong, Dr Shima Abdelrahman and Action Duchenne. For more information: tinyurl.com/5fekvhdb

Do you happen to know a media and PR whiz? We're thrilled to unveil a fantastic new job opportunity for someone to work alongside our brilliant fundraising team as the Media and PR Manager. Find out more: musculardystrophyuk.org/about-us/work-…