emma sweeney

[emma sweeney @elridd]

@StadiumOfLight @takethat @Ticketmaster really poor show tonight. Arrives at 18:15 still queuing to get in, stadium still miles away. Haven’t seen a steward yet to advise of correct entry. Bit of a downer and totally missed @belindacarlisle and probably @thescript

[Rachel A-S @Chuffin_ell]

Is it just me? Or is finding and keeping suitable carers for someone with complex needs one of the hardest, most draining jobs there is — and we’re not even paid for it?

A thread 🧵

[emma sweeney @elridd]

@alisonpearsonSW @MartinSLewis Snap! 11 years in

[emma sweeney @elridd]

@BexGoneWest You just popped up on my timeline. As mam to 2 children with a rare complex epilepsy diagnosis, I feel understood looking at your art. Thank you

[Rachel A-S @Chuffin_ell]

“No breaks, annual leave, sick leave, or uninterrupted rest periods. We are expected to carry on, day after day, with little or no sleep. That’s why many carers don’t need alarm clocks – because their shifts never end”

https://t.co/RRkzWFPXSr

[emma sweeney @elridd]

@AldiUK Ooh could you help raise awareness of #wwox related genetic disorders. Less than 150 cases worldwide and I’m proud mammy to 2 of them @WwoxF #AldiAdminDoesAdmin

[emma sweeney @elridd]

@romankemp @ZoesPlaceMidbro are amazing!

[Bethany Hudson @hudson15063]

So proud of the MACH Team - joint team of the year award . Even DC Sweeney is chuffed @moll2rhe_julia @jordan_mbc

[emma sweeney @elridd]

@MartinSLewis Existing following. I would like to nominate @ZoesPlaceMidbro who are amazing and have cared for my children with #raredisease #woree syndrome

[emma sweeney @elridd]

@HalifaxBank This is not good enough. The call waits are 2hrs! The you get cut off. Why can’t the person I was speaking to call me back??

[emma sweeney @elridd]

@HalifaxBank 3.5hrs so far trying to speak to fraud team. Finally do &get cut off! My child is in hospital after major surgery I can’t sit in queue again and my card is blocked. Please contact me

[emma sweeney @elridd]

This #ChildrensHospiceWeek, I’m completing the #PushedToTheLimits: 99,000 Steps Challenge for @Tog4ShortLives – one for every seriously ill child living in the UK. Please support this important cause by sponsoring me. #ForTheChildren https://t.co/LtDlLDI6XI

[emma sweeney @elridd]

@jowhiley Brother and sister Joe and Sophie fighting #woreesyndrome together @WwoxF #wwox #NationalSiblingsDay2022 #raredisease

[emma sweeney @elridd]

@JacobYoungMP Families with disabled children already spend £600 extra on energy than average households, and that's BEFORE bills soar in April. As my MP, will you call on @RishiSunak to help in the Spring Statement? #OutOfEnergy @contactfamilies https://t.co/3d4t5HOS9G

[WWOX Foundation @WwoxF]

TODAY IS RARE DISEASE DAY!
On this day we raise awareness for all of those affected by a rare disease around the world, including our WWOX warriors.
We will be sharing important facts about this throughout the day, join us and share!
#rarediseaseday #raredisease #rareepilepsies

[WWOX Foundation @WwoxF]

Two years ago our foundation was formed by a group of parents with children affected by devastating syndromes associated with the WWOX gene.
Learn the story of how two brave parents from Australia made this possible.
#wwox #raredisease #epilepsy #disability #genetherapy

[emma sweeney @elridd]

Please help raise awareness of #wwox gene mutation on wwox awareness day. My children are 2 of less than 100 affected worldwide. They are warriors! #wwoxday #woree #raredisease @hollywills @Schofe @GaryLineker @ThisisDavina @JasonManford @ZoesPlaceMidbro @hayleysoraya

[WWOX Foundation @WwoxF]

🧡 DAY 16 🧡
HAPPY INTERNATIONAL WWOX AWARENESS DAY!!

On this day we celebrate the lives of all of the WWOX Warriors around the world and their families and thank everyone involved in their care, education and the research for a cure!

#wwoxday #wwox #raredisease #epilepsy

[emma sweeney @elridd]

Please help raise awareness of wwox gene mutation. My children, who live in Teesside, are 2 of less than 100 sufferers worldwide @StephLunch @JamesArthur23 @SimonClarkeMP @SaraDaviesCC @Tanni_GT @markbenton100 @chris_kammy @JeffStelling @SarahMillican75 @ScarlettMoffatt

[WWOX Foundation @WwoxF]

🧡DAY 8
A DAY IN THE LIFE OF...
Sophie and Joe from the UK 🇬🇧
Today we get a look into the life of these two siblings, both affected by WOREE Syndrome.

#wwox #raredisease #epilepsy #specialneeds #disabilities #warrior #geneticdisease #rareepilepsy

[WWOX Foundation @WwoxF]

🧡 DAY 2
WWOX and Rare Disease

There are approximately 100 cases of WWOX related syndromes WORLDWIDE, making this genetic condition an ultra rare disease.

#wwoxday #wwox #raredisease #rareepilepsy #epilepsy #disabilities #specialneeds #genetherapy #genetics

[WWOX Foundation @WwoxF]

🧡 GET READY! Starting tomorrow please join us on 16 Days of WWOX Awareness and learn more about the diseases related to this gene and our work at the WWOX Foundation.
#wwox #raredisease #rareepilepsy #geneticdisorder #specialneeds #disabilities #epilepsy #awareness #wwoxday