Can you invest in research & help provide a voice?
Many people with ataxia experience difficulties with speech, which can make everyday communication challenging.
Our Friend, David was diagnosed with SCA6 in 2014. Though he understood that speech problems were a common symptom of ataxia progression, thankfully, his progression was slow.
You can help improve the quality of life for people affected by ataxia, through funding research projects that benefit the community now and for years to come.
SLT is an important treatment to support people with ataxia when their speech is affected. However, research isn’t just about treatments. It’s also about researching ideas to help make life better and easier for people affected by ataxia. Slurred or unclear speech can affect conversations with family and friends, reduce confidence, and limit social interaction and independence. For people living with ataxia, voice-controlled technologies can provide useful assistance with everyday life. While voice-controlled technologies are now widely used, they often struggle to understand speech affected by ataxia, meaning that many people are unable to benefit from these tools.
Our Friend, David took part in an early version of our Speech & Language Therapy Course and this is his story:
“In 2021 I first noticed some hesitancy in my speech. I was alert to the prospect of worsening speech and had met other ‘Ataxians’ at support group meetings with more speech difficulties. Accordingly, when Ataxia UK introduced the opportunity to contribute to a speech and language research project called ‘Clear Speech Together’, I engaged with the programme.
The ‘Clear Speech Together’ programme offered speech and language therapy (SLT) in a group setting, with sessions delivered over Zoom. Working with the Speech and Language Therapist & the Professors who led the sessions, I learned several lessons:
- Participants in my group had a variety of different ataxias
- All had impaired speech, worse than mine
- My main impediment, at this early stage, was stumbling over multisyllabic words
- SLT is about breath control as well as about speech
- “Use it or lose it” applies as much to speech muscles as to other motors
I remained engaged with this zoom group for a year or two until it ended. In the 3 or 4 years since, my speech has continued to deteriorate (this is a multisyllabic word I now struggle with)”.
Find out more about Ataxia UK's Speech Therapy Project here
Ataxia UK has recently provided funding for a research project aiming to improve speech recognition technology for people with ataxia.
This project, which is a collaboration between the University of Manchester, University College London, the University of Sheffield, the University of Strathclyde and NVIDIA, aims to develop speech recognition technology that is better suited to the unique ways people with ataxia speak. Because ataxic speech can vary greatly between individuals and change over time, a “one-size-fits-all” approach does not work well. Instead, this research will focus on creating speech recognition systems that can be personalised to an individual’s speech using only a small amount of recorded speech.
To do this, the project will work with people with ataxia to collect speech data in an ethical and supportive way. The collected data will help researchers develop and test new approaches that make speech recognition more accurate and more inclusive. In the longer term, this work aims to support the development of communication tools that help people with ataxia express themselves more easily, take part in conversations, and improve their quality of life – You can find out more about this project HERE.
By generously donating today you can help support people affected by ataxia. Researchers and clinicians are developing new and exciting ways to improve quality of life for people with ataxia & donating today can help us invest in more research projects.
You can help improve the quality of life for people affected by ataxia by donating to research projects today, that will benefit the ataxia community now and for years to come.