<![CDATA[Pressat Main Newswire]]> https://pressat.co.uk/rss/ <![CDATA[Pressat Main Newswire]]> https://pressat.co.uk/media/site/logo.png https://pressat.co.uk/rss/ en-gb Copyright: (C) Pressat Pressat <![CDATA[ Ben Spencer, a man with ataxia, a degenerative neurological condition has taken on climbing Mount Snowdon and conquered it to raise awareness and funds for Ataxia UK. ]]> https://pressat.co.uk/releases/ben-spencer-a-man-with-ataxia-a-degenerative-neurological-condition-has-taken-on-climbing-mount-snowdon-and-conquered-it-to-raise-awareness-and-funds-for-ataxia-uk-9d6766a0cf65fd00ba31391b5e4fdb8d/ https://pressat.co.uk/releases/ben-spencer-a-man-with-ataxia-a-degenerative-neurological-condition-has-taken-on-climbing-mount-snowdon-and-conquered-it-to-raise-awareness-and-funds-for-ataxia-uk-9d6766a0cf65fd00ba31391b5e4fdb8d/ Wednesday 21 June, 2023

Where: Snowdonia National Park [Yr Wyddfa]


When: 14th June 2023


How: Snowdon Climb - Wheelchair and rollator walking device for the main climb and then the final push on two adapted walking sticks. - Travel to Snowdonia on accessible public transport to highlight travel providers who take disability travel seriously.


Support team: 5 Volunteers


Climb time: 16 Hours. With travel and rest days this will be a 5-day marathon.


Ben Spencer, aka the Tube Snapper is known for his extraordinary challenge of visiting and photographing every single one of the 272 stations on the London Underground network. This was a 4-month challenge against the time, as Ben wanted to make sure he does this before ataxia takes away his ability to walk. Following this endeavour, Ben received significant air time from organisations such as BBC and ITV and multiple other news outlets, in addition to having grown his social media following which now includes the likes of: TFL, The London Transport Museum, BBC TV and Radio, Euronews Travel and Transport.


This challenge has gained Ben international news coverage, which he used to raise awareness of his condition, ataxia, as well as the need for improvements in accessible travel within the capital and beyond. But Ben felt he needed to do more to raise awareness and funds for others affected by ataxia.


Which is why on 14th June 2023, Ben has faced his toughest challenge yet. After several months of training, he decided to climb up as far Mount Snowdon as possible [Yr Wyddfa]. Ben has also decided to document his journey to raise awareness of accessibility in London and beyond. Ben said that he: “will be using wheelchair accessible transport including a London Bus, The London Underground, the Elizabeth Line, Mainline Trains and the Snowdon Sherpa bus service to get to base camp in Wales.”


The climb day was long and exhausting. Starting at 6am and finishing just shortly before midnight, Ben and a support team of 5 took the Llanberis path, leading them to the peak of Mount Snowdon. To do this, Ben used a range of mobility aids including sticks, a rollator and a wheelchair. Ben said about the day that: It took 16.5 hours and a support team of 5. Using my wheelchair, Veloped walking machine and adapted walking sticks I got to the top of Yr Wyddfa, Mount Snowdon. To all the people who have donated so far, your money will make a huge difference to the 500 children and 10,000 adults in the UK with Ataxia. Let’s get a cure for Ataxia.


Ataxia is a progressive neurological condition that disrupts the messages sent from our brains to our muscles. Not just the muscles we use to move, but those we use to speak, listen and see. Over time, people with Ataxia are slowly imprisoned in their own bodies, losing the tools they once had to communicate with loved ones. In some cases, it affects the heart muscle, making it difficult for the heart to pump blood around the body which can lead to heart failure. More than 10,000 adults and 500 children in the UK live with Ataxia. It is hereditary, it is progressive. There is no cure. Yet.


For his awareness and fundraising journey, Ben has received support from Ataxia UK. Ataxia UK CEO, Sue Millman, said that: “most people can’t conceive the access problems for disabled people when using public transport, unless they’re disabled themselves or they have had close contact with somebody who is disabled. The simplest journeys can become complicated by one or two steps, or the lack of dropped curb.”


Ataxia UK funds research to find treatments and cures and until one is found they offer support to families affected, and looks to improve treatment and care for patients.


Ben’s story is not just that of 10,000+ people in the UK with ataxia, but all of those that face issues while using public transport on a daily basis. As Sue Millman put it: “We should create an accessible world for everybody.”


You can watch the video explaining Ben’s fund and awareness raising efforts here: https://www.youtube.com/watch?v=gYntt-a6GHA


For more information on Ben and his journey visit www.snowdon4ataxia.com, for more information about ataxia, see www.ataxia.org.uk, and with any press-related queries, or requests for video and stills content from the climb day, please contact Viktor Elzer 020 7582 1444 or email Ataxia UK’s communications team at: communications@ataxia.org.uk.


About ataxia:


Ataxia is a group of neurological disorders that disrupt the communication between the brain and the body; the cerebellum and our muscles. There are many different types of ataxia that can affect people in a variety of different ways. Ataxia disrupts someone’s ability to communicate: it erodes speech, vision and hearing, isolating them from loved ones, friends and society. Ataxia disrupts someone’s ability to move their body in the way they wish. Ataxia disrupts someone’s agency; their ability to work; their independence; their choice; their control. Ataxia disrupts every aspect of a person’s life. Then their life itself. Ataxia disrupts the heart’s ability to beat. Ataxia disrupts how the public perceive people. People with ataxia are often misinterpreted as drunk because of their wobbly walk. When they try to explain why, they are misunderstood again because of their slurred speech.Anyone of any age can get ataxia, but certain types are more common in certain age groups. For example, people with Friedreich’s ataxia are usually diagnosed in childhood or adolescence. Around 10,000 adults in the UK currently live with a form of the condition. Ataxia UK is currently funding research to find out how many children have the condition, but it is thought there are several thousand.   Some forms of ataxia are treatable, but in most cases there is still no

About Ataxia UK:


Ataxia UK funds research into treatments for the condition and our ultimate aim is to find a cure. The charity also supports those with ataxia through a range of services - from providing a helpline and other information resources, to organising events and local support groups. For more information on the charity’s work and its other events go to www.ataxia.org.uk or visit the Ataxia UK Facebook page www.facebook.com/ataxiauk. Please connect with us on twitter @AtaxiaUK Many people with ataxia have their own websites and blogs – links can be found at http://www.ataxia.org.uk/pages/local-support.html


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https://www.ataxia.org.uk/ 21 Jun 2023 16:34:56 GMT Charities & non-profits Transport & Logistics Travel & Tourism
<![CDATA[ Ben Spencer, aka TubeSnapper takes on his biggest challenge yet in the form of Snowdon4Ataxia ]]> https://pressat.co.uk/releases/ben-spencer-aka-tubesnapper-takes-on-his-biggest-challenge-yet-in-the-form-of-snowdon4ataxia-2ebe5775cd57532fe5b41d44ff99d6cd/ https://pressat.co.uk/releases/ben-spencer-aka-tubesnapper-takes-on-his-biggest-challenge-yet-in-the-form-of-snowdon4ataxia-2ebe5775cd57532fe5b41d44ff99d6cd/ Tuesday 6 June, 2023

Will you support Snowdon4Ataxia and help Ben Spencer AKA Tube Snapper, wheelchair user, raise awareness of his degenerative neurological condition, Ataxia, and highlight accessible travel within London and the UK when he climbs Mount Snowdon?






Where: Snowdonia National Park [Yr Wyddfa]

When: 14th June 2023



How: Snowdon Climb - Wheelchair and rollator walking device for the main climb and then the final push on two adapted walking sticks. - Travel to Snowdonia on accessible public transport to highlight travel providers who take disability travel seriously.





Support team: 4 Volunteers


Estimated climb time: 15 Hours. With travel and rest days this will be a 5-day marathon.



Ben Spencer, also known under his Instagram moniker, Tube Snapper, has recently completed the extraordinary challenge of visiting, entering, exiting, and photographing every single one of the 272 stations on the London Underground network using two especially adapted walking sticks. This was a challenge against time, as Ben wanted to make sure he did this before Ataxia took away his ability to walk. After this 4-month endeavour, Ben was in the media in the UK and internationally for 5 weeks, including TV News from the BBC and ITV, multiple newspapers, multiple BBC Radio shows, and numerous online news sites. He is now championing disability access, and highlighting issues mobility impaired travellers face on his social media channels. Releasing content every few days, he has built up a significant following from the transport and disability communities, and is followed by significant individuals at TFL, the London Transport Museum, BBC TV and Radio, Euronews Travel and Transport Enthusiasts.














Ataxia is a progressive neurological condition that disrupts the messages sent from our brains to our muscles. Not just the muscles we use to move, but those we use to speak, listen and see. Over time, people with Ataxia are slowly imprisoned in their own bodies, losing the tools they once had to communicate with loved ones. In some cases, it affects the heart muscle, making it difficult for the heart to pump blood around the body which can lead to heart failure. More than 10,000 adults and 500 children in the UK live with Ataxia. It is hereditary, it is progressive. There is no cure.Yet.









So, to help inspire all those with Ataxia and raise funds for research and supportive care, Ben has decided to undertake his biggest challenge yet – Snowdon4Ataxia. As Ben says, he’s planning to: “...get as far up Snowdon using my wheelchair and rollator. I will be using wheelchair accessible transport including a London Bus, The London Underground, the Elizabeth Line, Mainline Trains and the Snowdon Sherpa bus service to get to base camp in Wales. I will then be taking the Llanberis path, hopefully to the top of the mountain, starting in my wheelchair, then transferring to my rollator, and for the final push to the top using my adapted walking sticks.”









For his ongoing awareness and fundraising journey, Ben is receiving support from Ataxia UK. Ataxia UK CEO, Sue Millman, says: “Most people can’t conceive the access problems for disabled people when using public transport, unless they’re disabled themselves or they have had close contact with somebody who is disabled. The simplest journeys can become complicated by one or two steps, or the lack of a dropped kerb.”







Ataxia UK funds research to find treatments and cures, and until one is found they offer support to families affected and look to improve treatment and care for patients. Ben is looking for help to get up Mount Snowdon as far as he can. For this he needs the help of travel providers, mobility aids manufacturers and the travel community.





Ben’s story is not just that of 10,000+ people in the UK with Ataxia, but all of those that face issues while using public transport daily.



As Sue Millman put it: “We should create an accessible world for everybody.”


You can watch the video explaining Ben’s fund and awareness raising efforts here: https://www.youtube.com/watch?v=gYntt-a6GHA. Ben is serious, Ben is determined. For more information on Ben and his journey visit www.snowdon4ataxia.com. For more information about Ataxia, see www.ataxia.org.uk, and with any press and sponsorship-related queries, please contact Viktor Elzer on 020 7582 1444 or email Ataxia UK’s communications team at: communications@ataxia.org.uk




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https://www.ataxia.org.uk/ 06 Jun 2023 13:30:02 GMT Charities & non-profits
<![CDATA[ 10,500 dives for ataxia lives ]]> https://pressat.co.uk/releases/10500-dives-for-ataxia-lives-4096fc84ab708cc081b6426178c5b170/ https://pressat.co.uk/releases/10500-dives-for-ataxia-lives-4096fc84ab708cc081b6426178c5b170/ Wednesday 1 December, 2021

PRESS RELEASE ASAP: Contact Leanna Coleman for more information or an interview.


10,500 dives for ataxia lives


Diving towards a cure for thousands affected by ataxia.


Leeds, UK


On Saturday 27th November, the City of Leeds Diving Club came together for an extraordinary fundraiser and awareness day in aid of the charity, Ataxia UK: they aimed to complete 10,500 dives for the 10,500 people in the UK affected by ataxia.


Divers ranged in age from 7 to 70 with a team of over 100 divers taking part including the Olympic and Commonwealth Gold medallist Jack Laugher MBE, Olympic and Commonwealth Games medallist Daniel Goodfellow, fellow Olympians Lois Toulson, Kat Torrance, current Junior GB diver Chloe Johnson, former junior GB divers Josh Dowd and James Milton, Oliver Crompton Junior European silver medallist, and retired Olympian Alicia Blagg who returned to the pool to help smash their target, together achieving 11,247 dives and raising £1,580 plus Gift Aid so far!


This ambitious fundraiser was created by Helen Dutton whose daughter is part of the Leeds Diving Team, who all came together to support those with ataxia and their families, as their Head Coach Marc Holdsworth, lives with Friedreich’s ataxia (FA). Sheffield, Harrogate and Sunderland Diving Clubs also joined in the effort to show their support, adding their own dives on the day.


The ataxias are a group of rare, neurological conditions. They disrupt your ability to control your body; to walk, talk and balance. They are progressive and currently there are no cures for the majority of ataxias.


Marc Holdsworth said: “Coming to terms with my diagnosis was difficult. I was a former junior national champion representing Team GB on a junior and senior level in diving. I then retired and struggled on simple tasks; walking down the stairs and carrying a cup of coffee”.


The event was one of real community spirit with divers, parents, friends and family all doing their part to support the event and Marc from the 10-metre board to the tombola.


Jack Laugher said: “The diving and ataxia communities are similar as they are both relatively small and close, and so we all know each another, and all really want to do what we can to support Marc and Ataxia UK”.


You can find out more about the event and donate by visiting: www.justgiving.com/leeds-dive-for-ataxia or by contacting Ataxia UK on fundraising@ataxia.org.uk.


Ataxia UK is the only charity in the UK that funds research into all of the ataxias and supports those affected until they find a cure. By donating to a fundraiser, your money will help those affected by ataxia by providing support via a dedicated helpline, crucial research into cures, useful publications, a network of Branches and support groups across the UK and much more.


Sue Millman, CEO of Ataxia UK said: "We are ecstatic to see such enthusiasm from the Leeds Diving Team and their ambitious event. Fundraisers such as this help to keep Ataxia UK afloat to continue supporting the 10,500 people in the UK and fund research into ataxia."


Ataxia UK funds research to find treatments and cures. They offer support to families affected and look to improve treatment and care for patients.


For more information visit ataxia.org.uk or facebook.com/ataxiauk


- Ends -






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https://www.ataxia.org.uk/ 01 Dec 2021 09:40:31 GMT Charities & non-profits Health
<![CDATA[ Hertfordshire man, Barry Hunt, runs 50km for the charity, Ataxia UK. ]]> https://pressat.co.uk/releases/hertfordshire-man-barry-hunt-runs-50km-for-the-charity-ataxia-uk-b585e72ca9abae179a1098dada32c1aa/ https://pressat.co.uk/releases/hertfordshire-man-barry-hunt-runs-50km-for-the-charity-ataxia-uk-b585e72ca9abae179a1098dada32c1aa/ Monday 25 October, 2021

Barry Hunt, the longest-standing Trustee of Ataxia UK has run an ultra-marathon in the 'Run to the Sea’ event in Bournemouth on Saturday 16 October.


Since 1999, Barry has been supporting Ataxia UK and is also part of Ataxia UK's Scientific Advisory Committee. Barry’s 'Run to the Sea'; a point-to-point 50km multi-terrain route from Ringwood to Hengistbury aims to raise £5,000 to help fund research into treatments and a cure for ataxia. Barry’s daughter Holly has Friedreich's ataxia, and ever since he found out about her condition, he has been actively supporting and helping Ataxia UK grow.


Ataxia means ‘lack of order’ and is an umbrella term for a group of neurological conditions that affect people’s balance, coordination and speech. Often people first notice a problem when they realise they’ve been falling over more than usual, struggling to walk in a straight line or have become more clumsy. As the condition progresses, walking may become difficult or even impossible, so people may need to use a wheelchair to get about some or all of the time. The ataxias affects people of all ages and some children, particularly with Friedreich’s ataxia, are in a wheelchair from early childhood. You can read more about ataxia at www.ataxia.org.uk.


There is no cure, but there is hope. Ataxia UK funds research into treatments and a cure for all of the ataxias. This explains Barry’s exceptional effort in doing his best to raise money for crucial ataxia research: he is hopeful, and hope is what makes us strong.


Barry said: "I joined the charity 20 years ago after my daughter Holly was diagnosed with Friedreich’s ataxia. At that stage, I thought that there was a need to encourage a wider portfolio of innovative projects for Ataxia UK, thereby changing their research strategy and to do that fundraising was crucial. In 2021 we are now supporting 11 research groups and continue to look to fund new and innovative research approaches that will benefit those with ataxia. So, any donations will really make a difference.”


Sue Millman, CEO of Ataxia UK, said: “Barry has been supporting Ataxia UK for over 20 years as both a Trustee and Scientific Advisor. In 2002 he ran the London Marathon to raise money. We are so grateful that he is doing yet another run for us.”


Want to get involved and support Barry Hunt? Show your support with a donation at: http://bitly.bz/SMgj1 to help fund scientific research into the ataxias.


For more information visit ataxia.org.uk or facebook.com/ataxiauk




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https://www.ataxia.org.uk/ 25 Oct 2021 09:31:23 GMT Charities & non-profits Health Medical & Pharmaceutical Sport
<![CDATA[ 28 Miles in 28 Days ]]> https://pressat.co.uk/releases/28-miles-in-28-days-3c1ed5524c24c8e30a6930c1217fe308/ https://pressat.co.uk/releases/28-miles-in-28-days-3c1ed5524c24c8e30a6930c1217fe308/ Friday 19 February, 2021

Thomas Riley – raising money for Ataxia UK

Hull, UK



Thomas is an 11-year-old boy who loves football, wrestling and gaming, like many of his friends. However, unlike his peers, Thomas has a rare medical condition called Friedreich’s ataxia.


The ataxias are a group of rare, neurological conditions. They disrupt the messages sent from our brains to our muscles, which makes communicating and moving a daily challenge. They are progressive and currently there are no cures for the majority of ataxias. Friedreich’s ataxia is the most common form of hereditary ataxia and symptoms usually begin in childhood, like they did for Thomas. Around 10,000 adults and 500 children have ataxia in the UK.


Thomas is known as an inspiration by many for his courage and motivation for life. In 2019 he won the Hull Daily Mail Golden Apple Award, ‘Against All Odds’, in recognition of his amazing positive attitude and outstanding achievements.


Recently, he has been inspired by the efforts of the wonderful Captain Sir Tom Moore, and has challenged himself to walk (and wheel!) a mile, every day in February. Though this may seem a small effort to some, Thomas struggles with his mobility, and spends an increasing amount of time in his wheelchair, so this is a huge physical and mental challenge for him. Thomas set himself a goal of raising £500 for Ataxia UK - a target which he has already exceeded 7 times over, with 2 weeks still to go!


Grandma, Margaret Riley, said: “Even a fall didn’t stop this superstar getting out there again. Thomas doesn’t give into anything.”


Mum, Lucy Riley, said: “We’re so proud of him. Despite the challenges he faces each and every day, he approaches everything with a smile. Even on the tough days, he still pushes through to achieve his goal. He’s so grateful to everyone supporting him.”


Since Thomas’ diagnosis of Friedreich’s ataxia, his family has made a tremendous effort into raising money for Ataxia UK and awareness of ataxia to support him. Dad, James Riley, has completed over twelve running events, plus a marathon around their garden; raising thousands for Ataxia UK. Friends and family have shown incredible support in many ways, taking on their own fundraisers, cheering at events and helping the Rileys.


Ataxia UK funds research into treatments and cures, and supports those affected by ataxia through their helpline, advice and information, branches and support groups across the country, and much more. But, now more than ever, they need help to continue supporting people affected by ataxia.


Sue Millman, CEO of Ataxia UK said: "We are delighted to see Thomas' courage and motivation in aid of raising funds to support others in the ataxia community. His support and enthusiasm, and that of all our fundraisers is vital in enabling Ataxia UK to support the thousands of people affected by ataxia."


The Riley’s write a wonderful blog with updates on Thomas and their life (https://lifeofrileys.org/). They also have a Facebook (@thelifeofrileys) and Instagram account (the_life_of_rileys) where you can follow Thomas’ incredible journey. If you would like to support Thomas, you can find his fundraising page at: www.JustGiving.com/fundraising/28milesin28days


Ataxia UK funds research to find treatments and cures. They offer support to families affected, and look to improve treatment and care for patients.


For more information visit ataxia.org.uk or facebook.com/ataxiauk




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https://www.ataxia.org.uk/ 19 Feb 2021 10:34:34 GMT Charities & non-profits Children & Teenagers Health