THE TRAGIC death of a teenager from an epileptic seizure sparked his sister to support an awareness-raising campaign for his condition.
Llinos Williams spent years trying to come to terms with the tragedy of her brother’s untimely death before she too was diagnosed with the same condition as him.
She reports that her diagnosis made her even more determined to support Epilepsy Action Cymru, who recently welcomed the news that they were chosen to receive £159,300 from the Big Lottery Fund.
The grant money will be used to improve access to information about epilepsy at different stages of care.
30-year-old Llinos Williams from Pwllheli was diagnosed with epilepsy following her having a seizure in her workplace.
The realisation that she’d been diagnosed with such a dangerous condition, especially one which had devastated her family the way it had, shocked her due to the fact that she had absolutely no idea that she was suffering from it.
Llinos said: “One of my brothers, Dylan, passed away after having a seizure when he was just 18-years-old in 2007. It was such a huge shock to the family as even though we knew he’d had epilepsy for about ten years, we didn’t know that people could die from it.
“I was diagnosed with epilepsy in 2012 after I’d had a seizure in my work place. After visiting my GP I later found out that it had been triggered by an infection.
“I was really scared because I was just thinking about what had happened to my brother, and to add to everything else as well I was scared for my other brother, Carwyn, who had been diagnosed in 2010 too.
“I had no idea that I had epilepsy for a long time, I had no problems at all when I was a teenager but that first seizure turned everything around.”
However, with the support of Epilepsy Action Cymru, Llinos and her family have managed to overcome many of the challenges that they face and are now championing awareness of the condition and helping others to learn more about it.
“Thankfully I’m really healthy now. I was lucky enough to find out about Epilepsy Action Cymru shortly after I was diagnosed and they have been so helpful with getting not just me, but my family to come to terms with my condition.
“Through them I’ve become a volunteer to raise awareness of the condition and give people advice on how to manage it, and have even spoken at conferences about my experience.
“It’s fantastic that the Big Lottery Fund has awarded this money to Epilepsy Action Cymru. The work that they do to help people like me is brilliant, and it’s important to be able to provide that support to as many people as possible.”
Ann Sivapathan, Wales Manager at Epilepsy Action Cymru, said: “We are delighted to receive this grant from the Big Lottery Fund.
“The money will allow us to provide a vital service to the 8,000 people living with epilepsy in Wales in the language they feel most comfortable with.
“We will be able to give accessible support and information, provide a voice for people with epilepsy on important healthcare issues and limit the social isolation felt by some people with epilepsy in this area.
“We believe this role will be a real lifeline for many people living with epilepsy in Wales.”
There are 13 other projects across Wales which have been granted a share of the £3,881,083 ‘People and Places’ funding from the Big Lottery Fund.
Leonard Charity Disability will be using £498,960 to expand their ‘Can Do’ programme from Cardiff, Newport, Swansea and Wrexham into more of Wales.
It is hoped that this expansion will offer 1,200 more young disabled people volunteering opportunities on community projects that will enhance their life skills and levels of independence, and ultimately break down social barriers that they face in day-to-day life.
Michelle Impanni, Senior Programme Coordinator for Can Do in Wales, said “We are delighted we can now develop the programme to reach even more young people across Wales to benefit from this volunteering programme.
“Can Do aims to support and equip our participants with the skills and confidence they need to live their lives fully and participate in society.”
Time to Change Wales, which is a partnership between Mind Cymru, Gofal and Hafal, have managed to secure funding from the Big Lottery Fund to deliver a brand new anti-stigma campaign for children and young people.
Antony Metcalfe, Programme Manager of Time to Change Wales, stated: “We are delighted to have secured funding from the Big Lottery Fund to deliver a brand new anti-stigma campaign for children and young people.
“We are really pleased to have the support of schools and teaching professionals across Wales and look forward to working with them to improve the lives of young people.
“It is crucial that action to improve mental health and reduce discrimination starts at a young age and we believe that this campaign will play an important part in this agenda.”
The People and Places programme seeks to award grants of between £5,001 and £1 million for a broad range of different community projects.
Highlighting the importance of this, Rona Aldrich, Wales Committee Member for the Big Lottery Fund, said: “Programmes like People and Places are making a difference to the lives of so many people in communities across Wales.
“It delivers on our promise to use National Lottery funding to regenerate and revitalise communities, tackle disadvantage head on and leave a lasting legacy.”
Update for Multi-purpose Community Centres following First Minister announcement
TODAY, First Minister Mark Drakeford announced that multi-purpose community centres including community centres, village halls, church halls and other community facilities can reopen from 03 May. This decision has been brought forward from 17 May.
Welsh Government announced changes during today’s briefing, and the guidance for multi-purpose community venues is being updated to ensure compliance with developments in regulations, including greater emphasis on ventilation. Welsh Government continue to advise authorities that the regulations on social gathering will still prevent a number of activities from taking place at community venues, and only organised activities for up to 15 people will be permitted.
The panel strongly advise you to make every effort to carry out your activity digitally or make contact by phone. If not, consider whether it is possible to hold your activity outdoors, in-line with Welsh Government guidance. Holding your activity indoors should be considered as a last resort. If this is the only option and it’s essential that you meet then please keep the session brief and involve as few people as possible, with all necessary procedures and protocols in place.
Those responsible for community activities should remember to;
- maintain a social distance of 2 meters.
- wear a face covering in indoor public spaces.
- regularly wash your hands for 20 seconds or use hand sanitizer provided.
A multi-agency panel has been set up to advise and support around the safe and proportionate reopening of facilities in-line with national guidance. The panel has been created under Ceredigion’s Public Services Board Sub Group; Understanding our Communities. Leading on the development of the group is Ceredigion Association of Voluntary Organisations (CAVO) and Ceredigion County Council in partnership with Heddlu Dyfed Powys Police and Mid and West Wales Fire and Rescue Service. The panel includes representation from Health & Safety, Environmental Health and Community Safety.
The panel encourages anyone responsible for community facilities to seek advice to ensure that arrangements are safe and secure and that compliance is in-line with national guidance. Prior to re-opening any community facility those managing centres must ensure that they are ‘Covid-Free Zones’.
The panel will aim to host another briefing session on April 28 at 13:30 to support those in charge of community venues with the latest developments. If you would like to join the next briefing session, please register here: https://www.eventbrite.co.uk/e/cyfleusterau-cymunedol-ceredigion-community-facilities-information-session-tickets-152071456821?aff=ebdssbonlinesearch or get in touch via the contact details below.
The multi-agency panel will continue to support and advise Community Groups and Organisations, and questions or information requests can be submitted to the group which meets on a weekly basis via CAVO on firstname.lastname@example.org or by phone on 01570 423232.
Together, we can keep Ceredigion safe.
Ceredigion Museum’s digital storytelling celebrates LGBTQ+ history month
February marks LGBTQ+ History month and Ceredigion Museum has been working with local organisation Aberration to unveil and record fascinating and untold stories of Aberystwyth.
These stories form part of the museum’s ‘It Happened in Aber’ project, which will allow people to listen to the untold stories that have shaped Aberystwyth.
This project was made possible thanks to the ’15-minute heritage’ funding, a partnership between The National Lottery Heritage Fund and Cadw, the Welsh Government’s historic environment service.
Carrie Canham, museum curator, said: “For too long the LGBTQ+ community has been marginalised, or even completely concealed, in history. Ceredigion Museum is keen to share the stories that have lurked in the shadows, to celebrate the diversity and rich LGBTQ+ heritage of Aberystwyth with pride.”
The LGBTQ+ stories researched and recorded with by Jane Hoy, of Aberration, include historic and modern-day characters from the town, including famous academics, poets, mariners, dancers and a spy!
“We are delighted to be working so closely with Ceredigion Museum contributing to ‘queering up’ the museum with lively local stories and events,” Jane.
Aberystwyth has certainly played its part in developing the LGBTQ+ community in West Wales and Sarah and Rosie, founders of Aberystwyth’s ‘Wrecked’ nightclub for women, have documented their fond memories of their venue in the town: “It became a fun and safe haven for lesbians who travelled there from all corners of the county”.
Ceredigion Museum staff and volunteers will be continuing to document stories linked to the LGBTQ+ community, as well as stories linked to specific locations in the town, until April.
From May onwards, The ‘It Happened in Aber’ stories will be available to enjoy in podcast format on the museum’s website as well as forming a digital walking tour of the town, allowing people to listen and enjoy the stories whilst walking around the locations in Aberystwyth.
Councillor Catherine Hughes said: “It’s fantastic that Ceredigion Museum is providing us with an opportunity to enjoy the history and the important contribution of the LGBTQ+ community in Aberystwyth. This is such an important project to document our local heritage. We look forward to listening to all the stories.”
If you can’t wait until the summer, join this years’ virtual Aberration – Between the Lines event on Friday, February 26 from 7pm, when the ladies of ‘Wrecked’ will be sharing some of their stories!
For further information or to share your untold story, contact Sarah Morton, Ceredigion Museum’s sustainability officer, at Sarah.Morton@ceredigion.gov.uk.
Aberaeron takeaway closed for ignoring coronavirus restrictions
A Premises Closure Notice has been issued to Paradise Pizza, Regent Street, Aberaeron due to repeated non-compliance with the Health Protection (Coronavirus Restrictions) (No.5) (Wales) Regulations 2020.
The business was issued with a premises improvement notice on 15th January 2021. It was required to take reasonable measures to prevent the spread of coronavirus, including the need to ensure that staff use personal protective equipment and face coverings. However, officers have since witnessed staff failing to wear face coverings on multiple occasions in contravention of their advice.
Monitoring inspections have shown that the majority of Ceredigion‘s retail premises are complying with the restrictions placed on them during the pandemic. Ceredigion County Council’s Public Protection team will continue to take action against businesses who fail to comply with the coronavirus restrictions. Whilst non-compliant businesses will usually receive advice and guidance, serious or persistent breaches will be dealt with by means of closure powers, fixed penalty notices or prosecution.
This takeaway must remain closed for 28 days, or until Public Protection officers are satisfied that the alleged non-compliance has been addressed.
Premises improvement and closure notices are required to be published by law.
The full closure notice can be found on Ceredigion County Council’s website, under Improvement and Closure Notices: http://www.ceredigion.gov.uk/resident/coronavirus-covid-19/coronavirus-improvement-closure-and-direction-notices/
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