Ataxia and Me

Ataxia and Me People with Ataxia have problems with speech, coordination and balance. Ataxia gets worse over time, until they become dependent on others.

patient founded and patient focused, run by patients Ataxia Patients Charity 1184030

Patients Helping Patients
encompassing associated Rare disease and Movement Disorders
Maximising the patient voice within the Medical / Health / pharma community

"Heads Up" for  COMING SOON       news
13/06/2026

"Heads Up" for
COMING SOON

news

13/06/2026

Our during

Providing information and resources for Advanced Therapies
12/06/2026

Providing information and resources for Advanced Therapies

Leading advanced therapies in Wales since 2019, connecting research, clinical adoption and UK partnerships within the Precision Medicine Portfolio.

Shared via Comunitatea Ataxia Romania
12/06/2026

Shared via Comunitatea Ataxia Romania

🇷🇴 Ce este, de fapt, dizartria în ataxie? 🗣️✨

Ai întâlnit vreodată pe cineva care pare să se lupte pentru a articula cuvintele, a cărui voce sună diferit sau a cărui vorbire este lentă și fragmentată? De multe ori, din ignoranță, societatea etichetează greșit acest comportament. Este momentul să facem vizibil ceea ce este invizibil.

👉 Simptomul 3: Vorbirea neclară sau sacadata(Dizartria).
Ataxia afectează coordonarea tuturor mușchilor, inclusiv a celor pe care îi folosim pentru a vorbi (limba, buzele, coardele vocale) și a controla respirația.

🧠 Ce se întâmplă, de fapt?
În ataxie, vorbirea lentă sau sacadată (numită medical dizartrie) nu are nicio legătură cu consumul de alcool sau cu lipsa de inteligență. Este, pur și simplu, o problemă de „rețea”:

🔹Coordonare întreruptă: Creierul știe ce vrea să spună, dar mesajul trimis către mușchii limbii, buzelor și ai corzilor vocale nu ajunge fluid.

🔹Eroare de sincronizare: Imaginează-ți o orchestră unde dirijorul (creierul) indică un ritm, dar instrumentiștii (mușchii) primesc semnalul cu întârziere.

🔹Efortul invizibil: Fiecare frază necesită o concentrare imensă.

💡 Cum poți ajuta?
Răbdarea este cheia. Faptul că vorbim mai greu NU înseamnă că auzim sau înțelegem mai greu.

🔸Oferă timp: Nu întrerupe și nu termina tu propoziția. Răbdarea ta este cel mai mare semn de respect.

🔸Doar așteaptă: Oferă-ne acele câteva secunde în plus pentru a ne exprima gândurile.

Echilibrul nu se referă doar la mers, ci și la modul în care ne conectăm prin voce. Ataxia este o provocare complexă, dar vocea fiecăruia dintre noi merită să fie ascultată cu demnitate și înțelegere. 🤝💙

ℹ️ Sursa informațiilor: www.ataxia.org




🇺🇸 What is dysarthria in ataxia? 🗣️✨

Have you ever met someone who seems to struggle to articulate words, whose voice sounds different, or whose speech is slow and fragmented? Often, due to ignorance, society mislabels this behavior. It is time to make the invisible visible.

👉 Symptom 3: Slurred speech (Dysarthria).
Ataxia affects the coordination of all muscles, including those we use to speak (tongue, lips, vocal cords) and control breathing.

🧠 What actually happens?
In ataxia, slow or slurred speech (dysarthria) has nothing to do with alcohol consumption or a lack of intelligence. It is simply a "network" issue:

🔹Interrupted coordination: The brain knows what it wants to say, but the message sent to the muscles of the tongue, lips, and vocal cords does not arrive fluidly.

🔹Timing error: Imagine an orchestra where the conductor (the brain) indicates a rhythm, but the musicians (the muscles) receive the signal with a delay.

🔹Invisible effort: Every sentence requires immense concentration.

💡 How can you help?
Patience is key. The fact that we speak with difficulty does NOT mean we hear or understand with difficulty.

🔸Give time: Do not interrupt or finish the sentence. Your patience is the greatest sign of respect.

🔸Just wait: Give us those few extra seconds to express our thoughts.

Balance is not just about walking, but also about how we connect through our voices. Ataxia is a complex challenge, but everyone's voice deserves to be heard with dignity and understanding. 🤝💙

ℹ️ Source: www.ataxia.org


This week we’re building carer friendly communities that support carers in every area of their lives. It is so important...
12/06/2026

This week we’re building carer friendly communities that support carers in every area of their lives. It is so important to recognise all that carers do!

If you know a carer (especially a carer for an ataxia patient) who deserves some recognition, let us know!

Carers Week

shared via National Ataxia FoundationFollowing a re-evaluation, Quebec's INESSS recognized the therapeutic value of SKYC...
12/06/2026

shared via National Ataxia Foundation

Following a re-evaluation, Quebec's INESSS recognized the therapeutic value of SKYCLARYS® for people living with FA. While the treatment was not recommended for public reimbursement at this time, this recognition represents meaningful progress and highlights the importance of continued advocacy to improve access.
Read more about the decision and what it means for the FA community: https://www.ataxia.org/pharmanews/

Following a re-evaluation, Quebec's INESSS recognized the therapeutic value of SKYCLARYS® for people living with FA. While the treatment was not recommended for public reimbursement at this time, this recognition represents meaningful progress and highlights the importance of continued advocacy to improve access.
Read more about the decision and what it means for the FA community: https://www.ataxia.org/pharmanews/

John Lewis   speaking at the   cafe by
11/06/2026

John Lewis speaking at the cafe by

Looking in on the   cafe by  We got on the exhibitior list slide
11/06/2026

Looking in on the cafe by

We got on the exhibitior list slide

Looking in on the   cafe by
11/06/2026

Looking in on the cafe by

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Swansea
SA34

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