We connect a community of over 110,000 people living with muscle wasting and weakening conditions. Together we are stronger. Join us. Our
#MusclesMatter
.
@jayckb
Christine Hamilton's tweet was made in a personal capacity and does not reflect the views of Muscular Dystrophy UK. We believe in a diverse and equal society, and are firmly against any form of discrimination.
@iamths1973
Christine Hamilton's tweet was made in a personal capacity and does not reflect the views of Muscular Dystrophy UK. We believe in a diverse and equal society, and are firmly against any form of discrimination.
We're delighted to welcome
@GabbyLogan
as our new President, and look forward to working together to
#MakeEveryDayCount
for people with muscle-wasting conditions:
Today’s news that
#Spinraza
will be made available on the NHS for patients with SMA Types 1, 2 and 3 in England is fantastic for families. We will now fight to ensure treatment is accessed UK-wide as soon as possible
“There are around 2,000
@ChangingPlaceUK
toilets but we want them in all venues where people gather.”
Our Director of Care, Campaigns and Support
@RobPBurley
was on
@BBCBreakfast
this morning talking about the need for specialist toilet and changing facilities
A huge well done to the 114 runners who ran and completed London Marathon 2018 today for MDUK. It wasn't an easy race with high temperatures but you all persevered to reach that finish line. Together, you have raised thousands for people affected by muscle-wasting conditions.
@KneelingPrince
Christine Hamilton's tweet was made in a personal capacity and does not reflect the views of Muscular Dystrophy UK. We believe in a diverse and equal society, and are firmly against any form of discrimination.
We're delighted to announce that
@Tesco
has committed to installing 30+ Changing Places toilets this year. Having the support of such a high-profile retailer is an encouraging step forward in
@CP_Consortium
's campaign and we hope others will follow suit:
Happy Birthday to our President
@GabbyLogan
, thank you for everything you do to support our
@MDUK_News
community by raising awareness of muscle-wasting conditions
We’re delighted to be working with
@MicrosoftUK
on plans for a new Xbox Adaptive Controller, as seen on
@BBCBreakfast
We want to help establish change in the gaming industry and are calling on more companies to take the needs of disabled people seriously.
All of us at MDUK are so very saddened to hear the devastating news this morning about Shiv. Our thoughts are with the Thakrar family who are such a positive force in the Duchenne and wider muscle-wasting community.
We’ve woken to the devastating news that Shiv, age 12 has passed away. His family are a massive part of the Duchenne community, nearly as massive as their love for one another and Shiv’s smile. Take the time for that extra hug today in memory of this beautiful boy
#RIP
@svt_mands
We’re delighted to tell you that the first boy with
#Duchenne
muscular dystrophy has been dosed as part of an international clinical trial sponsored by
@GenethonFr
to study a
#GeneTherapy
for the condition. Read more >>
On limb girdle muscular dystrophy awareness day, Cerys shares her unique journey, living with a disability in her twenties.
Leave your questions for Cerys below, and she'll respond in a follow-up video next week! 🎥
#LGMDAwareness
#LgmdAwareness
A cough assist machine costs about £4,500 – while a week-long stay in an intensive care unit can cost £13,000. Read about the work Muscular Dystrophy UK is doing to push CCGs to fund this vital equipment:
#RightToBreathe
Congratulations to
@HywoodMartin
, who has been shortlisted as Volunteer of the Year in the
@TSEawards
. Martin is a huge inspiration to others, and we are delighted that all his amazing work has been officially recognised! Read more here:
Congratulations to MDUK fundraiser
@HywoodMartin
for being highly commended in the 'Volunteer of the Year' category at last night's
#TSAwards
. A fantastic achievement!
Today we are pleased to announce a new partnership with
@ParkinsonsUK
@TheStrokeAssoc
@mssocietyuk
and
@ReasonDigital
to create a new AI health assistant, a first for the sector, providing content and support specific to an individual's needs. Read more >>
We welcome the announcement by
@transportgovuk
to invest £300 million in making railway stations more accessible. There's still a long way to go until public transport is accessible for all, but today’s announcement shows we're heading in the right direction.
#InclusiveTransport
We’ve been campaigning for access to Translarna since 2016 and today NICE has recommended it should be available on the NHS. Huge thanks to all of the families who have played a huge part in bringing about today’s decision. Read more at
We are excited to announce that we are the new co-chairs of the
@CP_Consortium
and will be fighting for more
#ChangingPlaces
toilets to be installed across the UK:
Huge congrats to our NI Council Chair
@Clairelohanlon
– a well-deserved honour to be receiving an MBE in the New Year Honours List for services to people affected by Duchenne. All your hard work makes a huge difference, and we couldn’t be prouder. Luke & your family must be too!
It’s Rare Disease Day 2022 and today, like every other day of the year, we’re here for every one of the 110,000 people in the UK who lives with a rare, progressive muscle-wasting condition. Visit our website to find out more >>
#RareDiseaseDay
We are delighted to announce that
@MDUK_Catherine
has been appointed Chief Executive of Muscular Dystrophy UK, following a full appointment process by the Board of Trustees. Read the full press release here >>
This week it was announced that the
#Duchenne
muscular dystrophy treatment,
#Translarna
, will now be available to children aged two to five in England via the existing Managed Access Agreement (MAA).
Read the full story here >>
@ActionDuchenne
A disabled boy is suing a theme park who refuse to provide a
#changingplaces
toilet. We need the law to change so new sites build them as standard, says the
@CP_Consortium
⭐It’s the brightest month of the year! ⭐ Join Bertie and go bright for the fight against muscle-wasting conditions this February. Share how you, your family and friends are going bright by tagging us in your photos & videos. 🧡
#GoBright
#MusclesMatter
This year’s London Marathon
#TeamOrange
runners are on track to raise a massive £250,000 for muscle-wasting conditions! Thank you and congratulations to all our amazing runners. Feeling inspired? Sign up now for next year >>
#MedalMonday
#MondayMotivation
MDUK is here to support anyone who has any one of the 60 rare or ultra-rare muscle-wasting conditions. Last year, over 25,000 people called our helpline, seeking advice & support. Learn more and help spread awareness this
#RareDiseaseDay
>>
@rarediseaseday
What an incredible day.
All 180
#TeamMDUK
runners have taken on and completed the 2024 London Marathon. We can’t thank them enough.
Together we are changing the future of muscle wasting conditions.
Inspired? Apply now to join us in 2025
What an INCREDIBLE day 🙌🧡
All 130
#TeamOrange
runners have taken on and completed the 2023 London Marathon and we couldn’t thank them enough.
THANK YOU for showing just how much
#MusclesMatter
Inspired? Apply now to join us in 2024 👉
“I am always in awe of the families and young people I meet at MDUK events.” MDUK’s President,
@GabbyLogan
MBE, celebrates her 50th birthday. To mark her fifth decade and special day, Gabby shares her favourite memories from her five years as president.
It's been a wonderful day at the
#MDUKConf18
- thank you to all our speakers and everyone who came along. A special thank you to Sue Barker who has handed over the President's role to
@GabbyLogan
.
#EveryDayCounts
@Bensongrrl
Christine Hamilton's tweet was made in a personal capacity and does not reflect the views of Muscular Dystrophy UK. We believe in a diverse and equal society, and are firmly against any form of discrimination.
Today is
#WorldFSHDDay
. We understand the everyday challenges of living with FSHD as well as the difficulties you may be facing during these uncertain times. We’re here to help with information, advice and support. Find out more and spread the message >>
Great news! Local authorities in England can now apply for the remaining £6.5m of a £30m government grant to install life-enhancing
@ChangingPlaceUK
toilets in communities. Contact your local council to encourage them to apply for funding for your area.
As
#London
opens up, many clinically vulnerable people with muscle-wasting conditions like Carmela will still be shielding. So MDUK is asking you to
#WalkWithCarmela
in her virtual 8-bit London.
Find out more >>
Today is Rare Disease Day, a day to raise awareness for the 1 in 17 individuals who live with a rare condition. We are joining
@GeneticAll_UK
to raise awareness today of how well coordinated care can make a difference to people’s quality of life.
Tomorrow, almost 130
#TeamOrange
runners will run the London Marathon in support of Muscular Dystrophy UK after months of training and fundraising.
Good luck
#TeamOrange
, and thank you for showing just how much
#MusclesMatter
🏃🧡
Chris is our first male runner back, his time was 3.11! Congratulations & enjoy your massage & shower! Chris says, "Going on to
#TowerBridge
was amazing, because that's where the biggest supporter area is. The cheers from the MDUK team lift your spirits."
Big news: research we’ve funded shows that there are now 110,000 people in the UK who live with rare, muscle-wasting conditions. These findings put us in a stronger position to fight for better specialist healthcare for our community. Read more >>
Nine year old Dan, who has Ullrich congenital Muscular Dystrophy, and his dad James, talks about the family fund
@Dans_Hope
which has raised an amazing £48,000 so far.
#MDUKConf18
#EveryDayCounts
Breaking news - Risdiplam, a drug that helps treat SMA, will soon be made available on the NHS in Scotland. We are delighted at this news and you can read more about it in our news story here:
Our Campaigner of the Year Award goes to Fiona Anderson
@ambitioust2428
the
@MD_Trailblazers
Transport Ambassador. Collecting her award with her daughter Abbigail, her passion and determination has helped push forward the Changing Places
@CP_Consortium
campaign.
#MDUKConf18
In just over a week's time, Comedian Andy
@ZaltzCricket
will be hosting our third virtual
#CelebritySportsQuiz
on Thursday 11 March at 8pm. Help us raise vital funds for the muscle-wasting community by joining us for a fun evening of sporting trivia! >>
Today, we’re proud to reveal our refreshed brand, which will help us to reach and support even more of our community. Together we are stronger. Join Us.
Find out more about our brand refresh here: Our
#musclesmatter
.
A big weekend for two of our amazing Ambassadors, Sue Barker OBE &
@JackWilshere
who are retiring from their current roles! We wish them the best of luck for the future and can’t wait to see them at one of our events soon as they continue their work for our community.
#thankyou
Carmela, 8, previously won the praise of Wonder Woman
@GalGadot
for her determined fundraising for MDUK.
Carmela who has a rare muscle-wasting condition, has now launched Wonder Wheels – a 66 mile fundraising cycle challenge.
@Cure4Carmela
Applications are open! We're offering a one-off cost of living grant in the form of supermarket vouchers, for people living with muscle wasting conditions. Applications are open for 2 weeks only, so don’t miss out! Find out more and apply here:
We’re really excited to announce our new partnership with AI technology company
@healx
. We will be working with Healx to identify potentially promising therapies for
#FSHD
. Read more >>
We’re delighted to hear the news today that the first baby in England has been treated with
#Zolgensma
on the NHS, a potentially life-changing gene therapy for
#SMA
Type 1. We look forward to further announcements and will update you as soon as we can. >>
We've gone very bold and bright in our office today - join in the
#GoBright
festivities and tag us in your photos using the hashtag! We can't wait to see your outfits!
Happy birthday to the late Prof John Walton who was born 16 September 1922. In 1959 he founded Muscular Dystrophy Campaign to improve research into these conditions and provide good clinical care. Today MDUK helps over 20,000 people affected by muscle-wasting conditions.
Prof Matthew Wood and his MDUK Oxford Neuromuscular Centre team have been awarded a £225,000 grant to investigate new delivery methods for gene therapy for
#Duchenne
. This could make more people with Duchenne eligible for gene therapy in future >>
#WDAD19
We've awarded £1.3M in grants for 11 research projects in our 2023 grant round! 🔬
These projects work to improve diagnosis, monitor progression, and test treatments for muscle wasting and weakening conditions.
"This constant battle with our bodies is tiring and so unhealthy, and especially so for people with disabilities." Read
#Disability
rights campaigner
@samrenke
's piece in
@MetroUK
on body positivity and overcoming negative body image >>
Access to healthcare is for everyone, but disabled women are being excluded from important health screenings because their local surgery doesn’t have a hoist. Our Trailblazers team want to know about your experience, tell us now >>
We're so proud of
@Clairelohanlon
who today received her MBE at Buckingham Palace. Claire has worked tirelessly to organise volunteering and fundraising for her son Luke and their Family Fund Leap for Luke. Read the full story >>
#EveryDayCounts
#Duchenne
Today is World
#FSHD
Awareness Day. Help spread the word and let people know why today is so important. Share our info graphic and tweet using
#WorldFSHD
and
#CureFSHD
to reach those needing assistance who may not know that help is available. Find out more
Good luck to all the teams in the
@MDUK_News
Powerchair Football Championship who will be playing their final fixtures of the season this weekend. We can't wait to see the results and round up the season action!
@The_WFA
#powerchairfootball
Congratulations
@GabbyLogan
for smashing it on
@Catchphrase
last night, winning an incredible £9600 for MDUK! Thank you so much for helping raise vital funds - your continued support is greatly appreciated. 🧡
We love your
#MusclesMatchdaySelfie
@OfficialTM_3
! Thank you for taking part!
Join Tyrone and get involved by taking a selfie in your fave football shirt, donating £5 by texting MDUK5 to 70660 or on JustGiving: , & nominating 5 friends to do the same ⚽️
We would like to wish HRH Prince Philip, Duke of Edinburgh, our Royal Patron since 1966, a very happy 98th birthday. Many happy returns from everyone at Muscular Dystrophy UK.
@RoyalFamily
#HappyBirthdayHRH
Today is
#DuchenneAwarenessDay
!
We are here for everyone with
#Duchenne
muscular dystrophy all year round, and everyone with a muscle-wasting condition.
You can read more about Duchenne on our website >>