The Minicore Project

A peer led non-profit support and information resource for families affected by the rare muscle-wasting condition #MultiminicoreMyopathy aka #MinicoreMyopathy

[The Minicore Project @MinicoreProject]

Help us raise £1500 to Bring 12 UK families together with the rare muscle-wasting condition Multiminicore Myopathy for the 1st time.. Please #donate on @justgiving and RT. https://t.co/0BC1iN65pW #TheMinicoreProject #MuscularDystrophy #RareDisease #charitytuesday #ReTweetThis

[Who Really Cares? @TheParentCarer]

No offers of assistance for my little boy at #Billericay station this morning - wheelchair just completely ignored AGAIN.

I’m sick of the lack of empathy and compassion - when are attitudes going to change at this station!

He deserves better. 😡

@greateranglia

[Changing Places UK @ChangingPlaceUK]

Today marks the start of #VolunteersWeek! We are so grateful to everyone that volunteers their time to fight for #ChangingPlaces toilets. You are all #incLOOsion champions- thank you!

[Nic Bungay @nic_bungay]

Looking forward to @24Diversity awards tonight as @Habinteg & our tenant @samrenke are shortlisted for THREE awards! Best New-Build Accessible Scheme, Best HR Policy & Community Role model: Congratulations to everyone who has been shortlisted & fingers crossed 🤞

[Nic Bungay @nic_bungay]

Huge thanks @KerryMP for raising the issue of #accessible housing for disabled ppl today @HouseofCommons & for challenging Minister on such a crucial matter: look forward to working together to push this forward @Habinteg @karenpassmore

[TwoRareMamaBears @2RareMamaBears]

#raredisease #truth #understanding #acceptance #awareness

[Nic Bungay @nic_bungay]

Huge thanks @OnnMel for raising the vital issue of #disability & the lack of #accessible homes during today’s Westminster Hall debate on the cost to the NHS of unhealthy homes: look forward to working with you @Habinteg to tackle this issue! @HouseofCommons @APPGHHB

[TwoRareMamaBears @2RareMamaBears]

#medicallyfragile #mamabear #truth 🐻

[The Minicore Project @MinicoreProject]

With such a #RareDisease like #MultiminicoreMyopathy, our families would be incredibly isolated without the internet. We strongly believe online is simply another way to connect, the strongest of friendships are with those you can relate to the most - regardless where you live

[Fi Anderson @ambitioust2428]

Many people believe #MuscularDystrophy to only affect males. When really they unknowingly refer to just #Duchenne. There are over 35 forms of MD, many of which affect BOTH genders. I still have Muscular Dystrophy, just not the one you've heard of...

#ThingsDisabledPeopleKnow

[Achoch @AchochOlala]

@ambitioust2428 Its frustating also when you tell someone you have #musculardystrophy and they keep talking about #MultipleSclerosis

[The Minicore Project @MinicoreProject]

@Danwhite1972 Has anybody ever witnessed guards popping down a ramp for a #wheelchairuser at number 10? Or do they get escorted round the back in the dead of night? 🤷‍♀️

[Dan White : Disability Campaigner / Author / ♿️ @Danwhite1972]

Taking Emily & her wheelchair along to Downing Street on Wednesday to hand in a petition about disability...the irony of the steps outside.

[The Minicore Project @MinicoreProject]

@MD_Trailblazers and other disability groups still battling hard for better access to public transport 😔 Sometimes it's hard to believe it's 2019...

[Dan White : Disability Campaigner / Author / ♿️ @Danwhite1972]

Wheelchair users are not wheelchair bound, however, bus drivers are apparently seatbound https://t.co/H9FHSJZvFk

[Disabled Children's Partnership @DCPcampaign]

I have lost count of the number of people who have said to me, “The thing is, Laura, what about those who simply can’t fight or who don’t know how to? What happens to them?”

@LauraSmithMP in the House of Commons, 19 January

#SecretLifeOfUs

[sophie morgan @sophmorgTV]

@coopukfood Why, in 2019, am left outside a central London branch, because “we aren’t allowed a ramp” & my partner told its not actually a requirement to have disabled access? Is this ok with you? Is it legal? What you going to do about it?

[Muscular Dystrophy UK @MDUK_News]

Clinical trials are important in developing our understanding of muscle-wasting conditions, as well as the effectiveness of drug treatments or other medical interventions. Find out more >> https://t.co/0i9V1rTiMU #EveryDayCounts #MusclesMatter

[Catherine Sawyer @ceesinsaw]

Your doctor tells you to try gentle walking/swimming to help, but if you do the benefits system will penalise you by reducing your money or completely stopping it come reassessment time. #ThingsDisabledPeopleKnow

[TwoRareMamaBears @2RareMamaBears]

ALL the #medicalequipment 💪 💪

[Nic Bungay @nic_bungay]

Huge thanks @uncannyvivek for taking the time today to meet me & the great team @Habinteg & @CAE_info : really useful to hear your experiences as we promote #accessibility, #independence & a better quality of life for disabled people 👍