CMT Yorkshire

Imagine how you’d feel if your hands no longer work properly and everyday tasks have become a struggle: picking up coins, pulling your card from a payment machine, doing up buttons, turning the key in your door lock ... #charcotmarietooth disease

As a minimum, what should be provied for driverless vehcles to be accessible to disabled people. We've thought about this and here's checklist on our website. proudlockassociates.com/2024/05/22/dri…

To answer a frequently asked question, the handle does NOT hit the surface (eg: door or window) when it Retracts. This is the silver aluminum T-Pull. *The silver version, is available in two colours: Black and Silver.* The ALUMINUM version was recently recognized by the Canadian Association of Occupational Therapists (CAOT). They are suited for high traffic areas or commercial applications. Not only are they made in Canada and are handy, high quality and durable, they are also very stylish! - #tpull #doorclosers #tpulldoorcloser #adaptiveequipment #accessibility #accessiblehome #disability #accessibledevices #caot

"Whenever I was in hospital, I felt that there was a tunnel visioned focus on the physical health of my body, detached from me as a sentient human being." Sarah Woolf describes how writing a simple note to hospital staff helped her heal bmj.com/content/386/bm…

Dear @CityofYork please share this paper widely amongst officers. It contains excellent advice on Inclusive Design from which you could benefit - eg the importance of receiving Disability Equality Training and shared good practice on consulting with disabled people…

"I know nothing about your condition," said Stewart's GP. Diagnosed with inclusion body myositis at 66, he had a spinal disc unnecessarily removed. We want to raise awareness of muscle wasting conditions among non-neuromuscular specialists. Read more: shorturl.at/Oj8tA

New blog. 'On using a walking stick for the first time' georgemckay.org/on-using-a-wal… @cmtausa @CMTUnitedKdom @CmtYorks @CMTNeuropathy @CMTandMeApp @DisabledAcadem @MediaDisABILITY @disabilityarts @johnpringdns

Honoured for the collaboration with @AnninaBSchmid in creating this new video on #neuropathicpain #IFOMPT2024 Here's the link at the full video youtu.be/mVxA_8U4ekE?si…

Congrats to our 2024 Alan J. Gebhart Prize recipients! Your exceptional dedication to excellence in peripheral nerve research is truly commendable. 🏆Mary Reilly, MD, FRCP, FRCPI, FEAN, FMed Sci 🏆Eduardo Nobile-Orazio, MD, PhD #Prizes #MeetingHighlight

Fantabulous advancement towards bringing treatments and a cure to Charcot-Marie-Tooth disease (CMT).

Gene Therapy Halts Progression of Spastic Paraplegia Type 50, a Rare Genetic Condition in Young Boy - please check the link for more rb.gy/5owzjw @SickKidsNews #SpasticParaplegia #SPG50 #RareDiseases

Day 12 yesterday and mum got us lost twice 🤣 but we still managed 7 miles We have reached nearly £5000 with gift aid! Fantastic amount, but still 2 days to go, so let's see if we can get closer to my target of £10,000 to help more children @Julias_House justgiving.com/page/carmelasj…

Please help to get the word out about this exciting project. We are creating a collaborative art installation for the new @UCLIoN building at 256 Grays Inn Road. If you live with a neuromuscular condition and would like to get involved, please get in touch.

Martin Clunes sends video to superhero fundraiser bbc.in/4eJtY67 #bbcsouthnews

Research from @AllForActivity has revealed #disabled people are still being left behind when trying to access #sports and #physicalactivities activityalliance.org.uk/news/9056-fift…

🧑⚕️A new deal for NHS colleagues in York. 💸 Travel for just £1 on any bus in York - just show your NHS colleague pass. ℹ️ More info > 2ly.link/1xzyr

🎙 New podcast episode! ➡️ Reporting Cases of Intermediate Nerve Conduction Velocity in Patients with Charcot-Marie-Tooth Disease Type 1A Listen and subscribe: spreaker.com/episode/inc-re…

Hidden disabilities are the topic of a lot of my work– creating things that help people to understand that despite ‘looking fine’ we may have very different limits and challenges to average people, and need to do things differently. Here's a few of our #HiddenDisability products:

Took an Uber home on Tuesday evening from Central London. The person driving was a qualified GP unable to get work. Post CCT, 100+ applications / CV drops to salaried roles around Herts & Bucks.

We have received FDA clearance for our IND application to initiate a Phase 2 trial of NMD670 in #CMT. This study will build on ESTABLISH findings, which demonstrated, for the first time, NMJ transmission deficit as a new disease characteristic. For more: nmdpharma.com/press-releases

@NMDPharma Early days but potentially exciting 🤞 #CMT1A