AccidentalAdvocate
@AccidentalAdvo1
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Mum to a family with #22q11 #VerbalDyspraxia #Autism RADLD ambassador Director Finding Charlie's Voice Learning as we go along. Tweets are my own
Cork, Ireland
Joined January 2021
Whilst you'd never wish it on anyone, it's great for our community to have a light shining on this tonight. Certainly looking forward to tuning in. @chris_kammy
@MikeysWish_VDA Thank you! #Apraxia #VerbalDyspraxia
#22q11 #slcn
@FindingCharlie
@22Q11_Ireland @iaslt @rareireland
Lost for words 🗣that’s a phrase you never thought would be associated with me 😂🤣
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https://t.co/i53UuvAZ72 Highly recommend doingbtgis survey of CDNT structure & delivery of services. Found it in-depth, not geared towards a pre-determined outcome, and plenty of boxes to write additional info
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In exactly one month’s time, we will be marking #RareDiseaseDay 2025 at @Europarl_EN! 📣 We call on MEPs to show their support for our rare disease community by joining the effort to advance EU-level policy. Learn more: https://t.co/YVDmunK7Ou
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Delighted for Finding Charlie's Voice being announced as one of the GAA's official charity partners 👏 The work Evelyn puts in behind the scene on a voluntary basis would put most paid officials to shame Communication is a fundamental right @FindingCharlie @officialgaa
#slcn
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Rare Diseases are a significant cause of physical, intellectual, sensory and mental health disabilities #ThinkGenetics and #GetRareAware
@UHW_Waterford 👏 @rareireland @RareDiseasesIE @rare_trial @raisingrareness @AccidentalAdvo1 @sujas15 @eurordis @ERNIthaca @HSEDubSouthEast
And just like that we are full steam ahead into 2025, sorting out education days and teaching programs for our wonderful staff in UHW #rarediseasesawarenessday #QIQAprogrammes #yourserviceyoursay @HSEDubSouthEast @SouthEastCH @NAS_Waterford
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Delighted to be at launch of National Genomic Test Directory for Rare & Inherited Diseases. A significant step forward for equitable access to diagnosis & care. @avrilbdaly speaking on behalf of PLWRD on the importance of this initiative. Thanks to NGGO!👏👏 @CMOIreland @CcoHse
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So many of us who have a child with additional needs are familiar with the ‘postcode lottery’ that exists for services & support. But….. an actual lottery for school places?? Is this where we’re at in 2025. So devastating for children & families, this is unacceptable every year
22 parents in Dungarvan told their autistic children don’t have a place in school as ‘there are no places’. One tells me lottery system at a school where a Garda Superintendent oversaw the pulling of names to ensure no question of bias later. Story on @wlrfm. Here’s Rebecca.
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Which is an issue I've consistently raised to no avail re the new children's hospital...no parking & told get the train ....but such inflexibility when we have no way of knowing if appointments will run to schedule is off putting @IrishRail @CHI_Ireland
@FinucaneOlivia @IrishRail Irish Rail changed their Flexi ticket policy during COVID, before you could get any train throughout the day. But now you have to stick with your allocated time. You can change to different train, but need to change online an hour beforehand & only if you haven't printed ticket.
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This teacher 'getting things done'... fundraising on a Saturday as the government do not adequately fund primary education.
The irony here is off the charts. Teachers are holding an underfunded, under resourced system together for years. A very rich man slagging them off at a Fine Gael launch is very on brand. He also called for transfers to Fianna Fáil. Very revealing.
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Delighted with the new Health Passport for #22q-had to convince #CareCoordinator Wes that I did not in fact have 1 & those blue folders that follow me to all clinic appointments were my own DIY passport🤣 It's such a simple but vital tool @22Q11_Ireland @CHI_Ireland @22q11Europe
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Tried booking this morning over phone as wheelchair accessible tickets can’t be booked online. Was told the kids would have to be seated away from me. @HawksWellSligo wheelchair tickets need to be available online and booked as part of group @AccessForAll7 @struggleiswheel
Hawk's Well Theatre presents The Whacky Witch and her Magic Cauldron🧙🏻♀️ An interactive family-friendly hilarious show which tells the story of the friction between three sisters & the pursuit of confidence. Tue 29 Oct -Wed 30 Oct 11am & 1pm >> https://t.co/VuMRVU45iK
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I think this is the kind of community policing we can ALL get behind. 👏👏 #dublinmarathon
#dublincitymarathon
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To harness their potential to drive #innovation #ERNs must be allowed to collaborate with all stakeholders Only 5% of #RareDisease have treatments & #HUMN - we need to act now @Together4RD @eurordis @Retina_Int @RareDiseasesIE @ErnEyeEU
Our President, @avrilbdaly, emphasises the vital role patients play in driving innovation - only by industry working together with patients can we make real progress in order to keep pace with research efforts outside of Europe. 🇪🇺
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One of the most glaring failings has been the fact even though a report sits on #Gov.ie commissioned by the Irish state around the additional cost of living with a disability in Ireland no action has been taken to address this failing. Two Ministers and many Taoiseach later we
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Remembering @gardainfo Garda Ciarán Jones who died on duty on this day 2011..he bravely went to warn motorists about dangerous flooding at Ballysmuttan Bridge,Co Wicklow during extreme weather conditions & sadly was swept into the river ..May he Rest In Eternal Peace
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Once this trial is over, Gisele Pelicot should receive every honour in France and the International Women’s award. What she says about shame shouldn’t need saying but she’s used her darkest hours and a global spotlight to do so. She’s extraordinary.
bbc.com
She tells a court she wants women who have been raped to know that "it's not for us to have shame - it's for them".
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Speaking of the need for a comprehensive European action plan on rare diseases at #WODC, experts including our own @castrorakel emphasised that this is the only way to guarantee the well-being and health of the 30 million people with rare diseases in Europe. #WODC2024
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Great to see real on-the-ground progress on this 👏 #Genetics @RareDiseasesIE @22Q11_Ireland @jobswithCHI @CHI_Ireland
The first Grá job CHI Genetics is advertised at last. Have a look? We so need this job filled. @RareDiseasesIE @22Q11_Ireland
https://t.co/YTdHISHgSt
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So proud to have played a small part in this and it's wonderful to see hard work paying off
Wonderful to see GRAs finally coming to pass. It's been a long journey; worth the effort to see these roles finally being recruited. Our #GetRareAware campaign was clear - we want a GRA in each region to support people locally accessing genetic services. @CcoHse @BernardGloster
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Disgraceful, it should have never have got to this point. What are you doing to fix these issues? @NormaFoleyTD1 @SimonHarrisTD
This is now a crisis. We've had 5 schools within our catchment area with staff shortages.Children with additional needs are missing out on valuable resource hours due to SET teachers stepping in to take the role of a teacher.This needs to be addressed @1Hildegarde @NormaFoleyTD1
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