Sarah Ezekiel

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Sarah Ezekiel (born 1965) is an artist. She has ALS and uses technology to control a computer cursor and create her images. [1] [2]

Ezekiel studied art and art history and had begun her career as an artist using primarily pastels, watercolors, and acrylics. [3] She was diagnosed with motor neuron disease in 2000. [4] [5] She had a young child and was expecting her second child at the time. [6] She cannot speak or move her arms. [7] She uses EyeGaze from assistive technology company Tobii Dynavox to paint with her eyes. [8]

She is a Lifelites ambassador, facilitating fundraising for the organization that brings technological assistance to children in hospice care. [9] She is also the co-chair of the Northwest London chapter of the MND Association. [10]

Exhibits and public events

Ezekiel's art has been shown internationally, including at The Royal Academy Schools and Katara Art Center in Qatar. [11] [12] In 2019, her works were among those exhibited by the MND Association at their 40th anniversary event. [13] In 2016 Ezekiel spoke at a Parliamentary reception supporting hospice medical care. She was also awarded the Third Sector Volunteer of the Year Award at this event. [10]

Related Research Articles

<span class="mw-page-title-main">Motor neuron diseases</span> Group of neurological disorders affecting motor neurons

Motor neuron diseases or motor neurone diseases (MNDs) are a group of rare neurodegenerative disorders that selectively affect motor neurons, the cells which control voluntary muscles of the body. They include amyotrophic lateral sclerosis (ALS), progressive bulbar palsy (PBP), pseudobulbar palsy, progressive muscular atrophy (PMA), primary lateral sclerosis (PLS), spinal muscular atrophy (SMA) and monomelic amyotrophy (MMA), as well as some rarer variants resembling ALS.

<span class="mw-page-title-main">Benign fasciculation syndrome</span> Medical condition

Benign fasciculation syndrome (BFS) is characterized by fasciculation (twitching) of voluntary muscles in the body. The twitching can occur in any voluntary muscle group but is most common in the eyelids, arms, hands, fingers, legs, and feet. The tongue can also be affected. The twitching may be occasional to continuous. BFS must be distinguished from other conditions that include muscle twitches.

George Wilson "Doddie" Weir was a Scottish rugby union player who played as a lock. He made 61 international appearances for the Scotland national team and represented the British & Irish Lions.

<span class="mw-page-title-main">Progressive muscular atrophy</span> Medical condition

Progressive muscular atrophy (PMA), also called Duchenne–Aran disease and Duchenne–Aran muscular atrophy, is a disorder characterised by the degeneration of lower motor neurons, resulting in generalised, progressive loss of muscle function.

<span class="mw-page-title-main">Motor Neurone Disease Association</span>

The Motor Neurone Disease Association focuses on improving access to care, research and campaigning for those people living with or affected by motor neurone disease (MND) in England, Wales and Northern Ireland. MND is also known as amyotrophic lateral sclerosis (ALS) or, in the United States, Lou Gehrig's disease.

Orla Hardiman is an Irish consultant neurologist. She was appointed Professor of Neurology by Trinity College University of Dublin in 2014, where she heads the Academic Unit of Neurology, housed in Trinity Biomedical Sciences Institute. She is a HRB Clinician Scientist and Consultant Neurologist at the National Neuroscience Center of Ireland at Beaumont Hospital, Dublin. She leads a team of thirty researchers focusing on clinical and translational aspects of amyotrophic lateral sclerosis and related neurodegenerations. Hardiman has become a prominent advocate for neurological patients in Ireland, and for patients within the Irish health system generally. She is co-founder of the Neurological Alliance of Ireland and Doctors Alliance for Better Public Healthcare. In the past, she established the bi-annual Diaspora Meeting, a forum for Irish neurologists based overseas to present and discuss their research findings with neurologists working in Ireland.

<span class="mw-page-title-main">ALS</span> Rare neurodegenerative disease

Amyotrophic lateral sclerosis (ALS), also known as motor neurone disease (MND) or Lou Gehrig's disease, is a rare and terminal neurodegenerative disease that results in the progressive loss of motor neurons that control voluntary muscles. ALS is the most common form of the motor neuron diseases. Early symptoms of ALS include stiff muscles, muscle twitches, gradual increasing weakness, and muscle wasting. Limb-onset ALS begins with weakness in the arms or legs, while bulbar-onset ALS begins with difficulty in speaking or swallowing. Around half of people with ALS develop at least mild difficulties with thinking and behavior, and about 15% develop frontotemporal dementia. Motor neuron loss continues until the abilities to eat, speak, move, or, lastly, breathe are lost.

<span class="mw-page-title-main">Ice Bucket Challenge</span> 2014 viral internet meme and fundraiser

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The Euan MacDonald Centre is a research centre which is part of the University of Edinburgh. The centre was established in 2007 and seeks to improve the lives of patients with motor neurone disease (MND). The centre was part funded by a donation by Euan MacDonald, who was diagnosed with MND in 2003, and his father Donald MacDonald. In addition to conducting research, the centre also offers clinical treatments. Around 130 are diagnosed with MND each year in Scotland alone.

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Justin John Yerbury was an Australian molecular biologist who was spurred to follow a career in biological research when he discovered his family has the genetic form of motor neurone disease (MND). He held the position of Professor in Neurodegenerative Disease at the University of Wollongong. He was diagnosed with MND himself in 2016, but continued to research until his death from the disease in 2023.

I Am Breathing is a 2013 Scottish/UK documentary feature film directed by Emma Davie and Morag McKinnon and produced by Sonia Henrici and associate producers Alex Usborne and Justin Edgar for 104 films. It follows the last months of Neil Platt, a young father with terminal and debilitating motor neuron disease (MND). It was funded by Channel 4, 104 films, the Scottish Documentary Institute and Danish Documentary Production

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Ammar Al-Chalabi is Professor of Neurology and Complex Disease Genetics at the Maurice Wohl Clinical Neuroscience Institute at King's College London, where he is also head of the Department of Basic and Clinical Neuroscience and Director of the King's Motor Neuron Disease Research Centre. In 2020, he received the Forbes Norris Award from the International Alliance Of Als/Mnd Associations and was a co-winner of the Healey Center International Prize for Innovation in ALS. His other awards include the Sheila Essey Award from the American Academy of Neurology and the Charcot Young Investigator Award from the Motor Neurone Disease Association. In 2021 he was appointed Senior Investigator at the National Institute for Health Research (NIHR).

Peter Bowman Scott-Morgan was an English-American organizational theorist, author, and expert in robotics. He had motor neurone disease and was known for his efforts to extend his life by becoming what he called a human cyborg. In 2020 he was the subject of Channel 4's documentary Peter: The Human Cyborg.

The Motor Neurone Disease New Zealand Charitable Trust (MNDNZ) is an organisation that focuses on improving access to care, research and campaigning for those people living with or affected by motor neurone disease (MND) in New Zealand. MND is also known as amyotrophic lateral sclerosis (ALS) or, in the United States, Lou Gehrig's Disease. MNDNZ is the only national charity in New Zealand that promotes research into the disease and provides support for people affected by MND.

References

  1. "Sarah Ezekiel: The artist who paints with her eyes". CNN. 19 August 2020. Retrieved 10 November 2020.
  2. "Sarah's Story: Enabled by Technology, She Paints Despite Motor Neuron Disease #MDN". 2 March 2015. Retrieved 10 November 2020.
  3. "Talent, tech and visual art". Wellcome Collection. 2 June 2020. Retrieved 10 November 2020.
  4. Lu Stout, Kristie (8 August 2020). "Tech For Good: Paralyzed artist with ALS paints with her eyes". YouTube.
  5. Tom Page; Video by Stefanie Blendis (19 August 2020). "'Technology has made my life worth living': Artist paints with her eyes". CNN. Retrieved 10 November 2020.{{cite web}}: CS1 maint: multiple names: authors list (link)
  6. Sarsby, Sarah (6 April 2020). "Artist with MND who paints with her eyes voices support for Lifelites and Eyegaze tech". AT Today - Assistive Technology. Retrieved 10 November 2020.
  7. Boniface, Michael (10 September 2020). "'It's a wonderful escape': Disabled artist on painting with her eyes and living with motor neurone disease". Hampstead Highgate Express. Retrieved 10 November 2020.
  8. "This artist paints pictures using her eyes and computer; here's how". The Times of India. 21 October 2020. Retrieved 10 November 2020.
  9. "Making art with the eyes - Sarah Ezekiel and Lifelites - GamesAidGamesAid". www.gamesaid.org. Retrieved 10 November 2020.
  10. 1 2 webvid.co.uk. "Sarah Ezekiel, Motor Neurone Disease Association". Third Sector Awards. Retrieved 10 November 2020.
  11. "Sarah Ezekiel". MND Association. Retrieved 10 November 2020.
  12. "Paralysed artist creates artwork using just her eyes". BBC. 3 May 2015.
  13. Newsdesk (11 September 2019). "'Art Beyond Limits' an exhibition marking 40 years of the Motor Neurone Disease (MND) Association". Charity Today News. Retrieved 10 November 2020.