Uncles Stephen

A family living with Myotonic Dystrophy, Founding Trustee of CURE DM Charity, 13 years a School Governor, 1 Labradoodle, 1 Staffy, 2 Cats & Southampton FC fan

[Uncles Stephen @UnclesStephen]

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

[Uncles Stephen @UnclesStephen]

@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.

[Uncles Stephen @UnclesStephen]

@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!!

[Uncles Stephen @UnclesStephen]

@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?

[Dr Ali Kay 🧬📚🌳 @AliMakesHay]

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. https://t.co/TkPZoLZfly

[Muscular Dystrophy UK @MDUK_News]

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.

[Dr Ali Kay 🧬📚🌳 @AliMakesHay]

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: https://t.co/pCEdGxxKCN

[Cierzo 💎🤟🏼🖖🏼💙🚀🛸🤺🛼🇪🇸🇬🇧🇨🇴 @cierzo1]

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.”

[DM1Research @DM1research]

$PGEN commences Phase 2 study of PGN-EDODM1 in patients with Myotonic Dystrophy Type 1 https://t.co/RlpOFh3JQJ

[Uncles Stephen @UnclesStephen]

@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

[Uncles Stephen @UnclesStephen]

@carlafrancome @LEGOLANDWindsor @CureDMCharity

[Nicholas Johnson @nickjohnson30]

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!

[Telegraph & Argus @Bradford_TandA]

Bradford City Hall and City Park Fountains were lit up in green on Sunday, September 15, for International Myotonic Dystrophy Awareness Day. https://t.co/KKlpTWYV6t 🔗 Link below

[Uncles Stephen @UnclesStephen]

@CureDMCharity

[Telegraph & Argus @Bradford_TandA]

Bradford City Hall and City Park Fountains were lit up in green on Sunday, September 15, for International Myotonic Dystrophy Awareness Day. https://t.co/KKlpTWYV6t 🔗 Link below

[筋強直性ジストロフィー情報集 @myotonica_info]

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.

[UAlbany Gov Relations @UAlbanyGovRel]

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

[Kelly Morrison @Morrison4MN]

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.
https://t.co/KD47vCn1Zk

[Myotonic Dystrophy Foundation @MyotonicStrong]

✨ 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! 👏

[筋強直性ジストロフィー情報集 @myotonica_info]

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