To all my friends here & all the good people on X - Please share this & support our campaign to have #Skyclarys# provided for our beautiful young men & women who suffer from #Friedrich’s# Ataxia - Taoiseach @MichealMartinTD has the power & means to Transform these precious lives

This is Obscene -Trump’s Cabinet of carpet baggers, fraudsters, paedophiles & rapists -Reversing Human Rights of #Disabled# Citizens -Demanding they be consigned to isolated congregated settings -Warehousing US Citizens with additional needs -#Pure# #Evil# 🥲

On the 23rd August 2025 so many of you stood with myself and @Stephen63224725 for #JusticeForHarvey# and all the children waiting for medical care. One year later, on the 23rd August we will again walk that same road, for those living with Friedreich’s Ataxia who are currently being denied access to a medicine that could not only extend their lives but also their quality of life and their abilities. When Harvey died it was very sudden, but we had to watch him deteriorate over the years while he waited for intervention and it is a heartbreaking thing for any parent to endure. For these people, they know there is an option, there is a hope in this medication and it is being withheld from them. This is why we will stand with them, walk with them and support them as they too face a system that is fighting them when it should be helping them.

This is shocking - Trump’s Administration of carpet baggers, fraudsters, paedophiles & rapists -Reversing the Human Rights of #Disabled# Citizens -Demanding that our community be consigned to isolated congregated settings -Warehousing US Citizens with additional needs -Pure Evil🥲

Today was a very hard day as we listened to the children, young adults and adults, parents, who live with Friedreich ataxia and how it’s slowly robbing them of life. They begged that the state would fund the drug Skyclarys and it was heartbreaking to hear. If @MichealMartinTD @SimonHarrisTD and @CarrollJennifer do any good in this dail term let it be that they insist that the HSE and Department of Health approve funding for this medicine and give hope back to the people who deserve it most. #OurLivesMatter# #Hope#

My @IrishTimes Review & Analysis of @SteveJFeldstein ‘s Bytes and Bullets: Study of AI arms race is meticulously researched and deeply disturbing In what is described as the Military-Tech ‘Gold Rush’ AI is being harnessed to create Autonomous Kill-Chains

If you can this Sunday please take the time to come to this march in support of those living with Friedreichs Ataxia as they continue to push for Skyclarys to be made available to them ✊ 12pm meeting at the Garden of Remembrance

This is an absolute disgrace. Ireland currently has one of the worst disability employment records in the entire EU, with less than half of working-age people with disabilities holding jobs. People with disabilities and neurodivergent individuals have just as much talent, capability, and value to offer as anyone else. Shutting them out of the workforce due to fear is nothing short of discrimination. A new survey of 150 employers conducted by Now Group highlights the systemic barriers candidates face: Fewer than 1 in 10 employers report feeling "very confident" about hiring neurodivergent people or individuals with disabilities. More than 50% of employers feel only "a little" or "not at all" equipped to recruit and support neurodivergent employees and workers with disabilities. 85% of autistic people are currently unemployed or underemployed, according to figures from AsIAm. 25% of employers cite fear of being "insensitive," while almost 20% say they wouldn't know how to provide basic workplace accommodations. Fear of "getting it wrong" or finding support needs "overwhelming" cannot remain an acceptable excuse to deny people their livelihood. Businesses need talent, yet thousands of capable individuals are left struggling just to get a fair shot. It is time for employers to stop letting fear dictate hiring practices, dismantle this discrimination, and actively open their doors. #DisabilityRights# #InclusionMatters# #Neurodiversity# #EqualOpportunities# #IrelandJobs# #WorkplaceInclusion#

The maker of the Friedreich’s ataxia drug Skyclarys have disputed figures cited by the HSE for the public reimbursement of the drug, as a crunch decision on the drug’s availability looms.

Huge congratulations and thanks to John Moore for developing this valuable platform. From securing school places to understanding your legal rights, offers step-by-step guidance, the latest news, events, and practical tools to help you navigate the world of disability. 🔗 Visit: #DisabilityRights# #DisabilitySupport# #Accessibility# #Inclusion#

This Sunday 23rd Aug I’ll be Protesting in Support of @AccessForAll7 & @AtaxiaFI Demanding @HSELive & @roinnslainte fund the life changing drug Skyclarys -We CANNOT as a Society Allow Beautiful Young #Disabled# Irish Citizens to Deteriorate & Lose Their Lives To ‘Cost Accountants’

Every single day, we watch taxpayer money poured down the drain on bureaucratic waste, administrative bloat, and ill-conceived projects. Yet, when it comes the lives and independence of just 200 Irish citizens suffering from Friedreich’s ataxia (FA), suddenly the state "cannot afford it." Friedreich’s ataxia strips away the ability to walk, speak, eat, see, and hear. It does not pause for bureaucracy. Over 740 days have passed since the evaluation process began, and every single day of delay means another ability lost forever. Skyclarys is the first and only approved treatment in the world proven to slow down this heartbreaking progression. The HSE Drugs Group recently recommended against funding it, leaving patients and their families in complete agony as they wait for the final HSE decision on August 25th. As Aoife Gavan (21) said: “Our lives are worth more than that.” 📢 How to Show Your Support & Demand Action Join the Protest: When: Sunday, August 23rd at 12:00 PM Where: Starting at the Garden of Remembrance (Dublin) and marching to Custom House Quay. Contact Your Local TDs Today: Before the HSE leadership team makes their final decision on August 25th, email and call your local representatives. Tell them that basic human dignity and life-altering healthcare must take priority over government bureaucracy. Our citizens shouldn't have to march on the streets just to fight for the right to hold on to their basic bodily functions. Lives are not line items on a spreadsheet. #GovtWaste# #Skyclarys# #FriedreichsAtaxia# #FA#

Make sure to get out and support the Friedreich’s ataxia community this Sunday in their completely justified fight for access to Skyclarys. They deserve to be heard, and they deserve access to treatment.

This Sunday 23rd Aug I’ll be Protesting in Support of @AccessForAll7 & @AtaxiaFI Demanding @HSELive & @roinnslainte fund the life changing drug Skyclarys -We CANNOT as a Society Allow Beautiful Young #Disabled# Irish Citizens to Deteriorate & Lose Their Lives To ‘Cost Accountants’

HIGH ALERT Govt have Announced Abolition of Irelands #TripleLock# -This Is Fundamental Error Of Judgement That Will Fatally Undermine Irelands Precious Militarily Non-Aligned #Neutral# Status -Govt Pushing False Narratives & Misinformation On Our #Neutrality# -We Need Referendum NOW