Highlighting issues re #CharcotMarieTooth disease; an inherited neurodegenerative condition. 4 sibs affected CMT1A
Yorkshire, UK
Joined December 2015
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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
CMT Yorkshire retweeted
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…
ALT An artist's impression of what a driverless car could look like. It's a white car with beacons and white flashed coming out; it;s on the approach to a zebra crossing and pedestrians.
CMT Yorkshire retweeted
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!
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#tpull #doorclosers #tpulldoorcloser #adaptiveequipment #accessibility #accessiblehome #disability #accessibledevices #caot
CMT Yorkshire retweeted
"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/bmj.q147…
CMT Yorkshire retweeted
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…
This afternoon we have launched our latest white paper "Creating a Public Realm for All".
To read the full paper here: ciht.org.uk/publicrealm
CMT Yorkshire retweeted
"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
CMT Yorkshire retweeted
New blog. 'On using a walking stick for the first time' georgemckay.org/on-using-a-w… @cmtausa @CMTUnitedKdom @CmtYorks @CMTNeuropathy @CMTandMeApp @DisabledAcadem @MediaDisABILITY @disabilityarts @johnpringdns
CMT Yorkshire retweeted
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=_IQG…
CMT Yorkshire retweeted
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
CMT Yorkshire retweeted
Fantabulous advancement towards bringing treatments and a cure to Charcot-Marie-Tooth disease (CMT).
This pre-print paper by @gokul_ramadoss explores genome editing via CRISPR in neurons. The @cmtausa works with the @TheConklinLab and this work will inform CMTA-funded studies by this group.
#CMTresearch #CMTASTAR
CMT Yorkshire retweeted
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
CMT Yorkshire retweeted
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/carmelas…
CMT Yorkshire retweeted
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.
CMT Yorkshire retweeted
Martin Clunes sends video to superhero fundraiser bbc.in/4eJtY67 #bbcsouthnews
CMT Yorkshire retweeted
Research from @AllForActivity has revealed #disabled people are still being left behind when trying to access #sports and #physicalactivities
activityalliance.org.uk/news…
CMT Yorkshire retweeted
🧑⚕️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
CMT Yorkshire retweeted
🎙 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-rep…
CMT Yorkshire retweeted
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:
CMT Yorkshire retweeted
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.
CMT Yorkshire retweeted
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
Thank you @Dalby_Forest for enabling us four siblings to explore the beautiful, if a little soggy, woodland together #accessibility #NatureForAll #CharcotMarieToothDisease 🌲
