Uncles Stephen

@GWRHelp you have clearly never tried to navigate a wheelchair down multiple carriages where it is standing room only.

@UnclesStephen I am sorry to hear this, please do let a member of onboard staff know and they can direct you to the nearest toilet that will accommodate a wheelchair. -Julia

@GWRHelp Total cock up on Chippenham to Paddington 09:26. Lift on the main entrance out of service. No staff on that side. Mad rush to drive to other side. No platform staff visible. Train carriage details wrong. Mad rush to access ramp. Train delayed. No seat reservations.

@GWRHelp Thank you, to add to the ever growing list, the toilet in the First Class carriage which is supposed to serve Disabled passengers is also Out of Order. Can’t get my wife down carriages in her wheelchair to find one that is working!!

@UnclesStephen In that case, you could send an email to gwr.feedback@gwr.com - Gordon

@GWRHelp The service was so bad in so many different areas. Your complaint forms assume it will be in just one area. How do I complain on multiple issues?

@UnclesStephen Hello, I'm sorry to hear that. To raise a formal complaint for investigation, please fill in our complaints form at railhelp.co.uk/gwr/make-a-com…. The customer support team will be in touch as soon as they can - Gordon

On August 2nd my eldest and I are taking on South West Coast ultra - 50km (31 miles) - for Muscular Dystrophy UK. My youngest son has a rare form of muscular dystrophy - a progressive muscle weakness condition. justgiving.com/page/ali-kay-1…

Dr. Valeria Di Leo lost 4 aunties to myotonic dystrophy, fueling her passion for research to help the muscle wasting community. "I want to give families like mine hope...and ultimately, a cure." We're funding her research into DM to help drive progress toward new treatment.

My fantastic friend has a festive fundraiser going. His son Matthew and wife Paula both have myotonic dystrophy. That’s a huge challenge. Steve is on run 10 of 12 Runs for Christmas. If you can, you can donate here and give him a little boost: justgiving.com/page/stephen-u…

Comment from a primary teacher: “we work hard and support the SEND children in primary. Do the paperwork, invite the secondary schools SENCOs to observe, be part of the last review of EHCPs, to be told by families, that secondaries ignore it, and blame families.”

$PGEN commences Phase 2 study of PGN-EDODM1 in patients with Myotonic Dystrophy Type 1 clinicaltrials.gov/study/NCT06667…

@carlafrancome @LEGOLANDWindsor @CureDMCharity We did, 20+ Lodges, allowed the families old and new to the Charity to meet up, get to know each other and mingle. A lovely weekend

@UnclesStephen @LEGOLANDWindsor @CureDMCharity Amazing. Did you stay in the woodland village?

GUYS! So last night we stayed at the Woodland village next to Legoland. The huts were cute, as were the Lego figures. But the REAL magic was that there were footpaths all the way through, and NO CARS! It completely transformed the atmosphere to being in a normal town. 🧵1/7

@carlafrancome @LEGOLANDWindsor @CureDMCharity

@UnclesStephen @LEGOLANDWindsor @CureDMCharity This is great to know thank you! I have been wondering …

The MDCRN meeting was a success! Thanks to all for working towards treatments for myotonic dystrophy, Charcot Marie tooth disease, facioscapulohumeral muscular dystrophy, and limb girdle muscular dystrophy!

Bradford City Hall and City Park Fountains were lit up in green on Sunday, September 15, for International Myotonic Dystrophy Awareness Day. dlvr.it/TDKPpZ 🔗 Link below

At DM-family, we are pleased Prof. Masanori P. Takahashi, Osaka University Graduate School presented his research on Myotonic Dystrophy and contributed from the DM-family to the registry and the natural history research at AOMC-JMS 2024 on September 13th, 2024.

Tonight, all across NYS, iconic landmarks like Niagara Falls, Empire State Plaza, Moynihan Train Hall, and the Gov. Mario M. Cuomo Bridge are being lit in green in recognition of International Myotonic Dystrophy Awareness Day. @ualbany @TheRNAInstitute

Today is International Myotonic Dystrophy Awareness Day. Thanks to the incredible Zabezhinsky family, buildings and bridges in Minneapolis are lighting up green tonight to honor the children and families impacted by this disease. cbsnews.com/minnesota/news…

✨ Yesterday, the @thernainstitute at the University at Albany gathered community members, researchers, students, and more to celebrate landmarks lit green across the city! 💚 What a great way to honor International #MyotonicDystrophy Awareness Day! 🌎 Huge thanks to everyone who made this possible & Sharan Shaughnessy for sharing! 👏

Congratulations on the International Myotonic Dystrophy Awareness Day! On this day, DM-family held a tea party in Omiya, Japan. #InternationalMyotonicDystrophyAwarenessDay