Community

Seizure death inspires awareness campaign

Published

8 years ago

June 7, 2016

Epilepsy Action UK receives £159,300 from the Big Lottery Fund: Llinos Williams raises awareness for the condition which killed her brother at the age of 18

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-yearsold 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 antistigma 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 antistigma 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.”

Community

Port supports Cruising Free’s Atlantic Dash with donation of safety equipment

Published

5 mins ago

November 15, 2024

Tom Sinclair

THE PORT OF MILFORD HAVEN has announced a donation of vital safety equipment to support local group Cruising Free, who will be embarking on a challenging 3,200-mile rowing journey across the Atlantic Ocean. The crew of Cruising Free will row from Lanzarote to Antigua to raise funds for the Cystic Fibrosis Trust and Paul Sartori Hospice at Home.

The Port of Milford Haven’s donation includes a comprehensive range of safety gear designed to support the crew’s journey and ensure their safety during this extraordinary expedition. Items provided include:

Flare Kit
Satellite Phone
VHF Radios
First Aid Kits
GPS Equipment
Lights
Safety Lines
And more

The Port of Milford Haven, the UK’s leading energy Port, is committed to supporting local maritime initiatives. This donation is a key part of the Port’s ongoing efforts to promote safety in all aspects of maritime activity, particularly for adventurous projects like Atlantic Dash.

“We are proud to support the amazing crew of Cruising Free as they undertake this monumental challenge,” said Mike Ryan, Harbourmaster at the Port of Milford Haven. “Safety is paramount for anyone taking to the sea, and we hope that the equipment we’ve provided will support them as they navigate the Atlantic. Their journey will not only raise vital funds for two incredibly worthwhile causes but also inspire people across the UK and beyond. We are excited to be part of their journey and wish them the very best of luck.”

The Atlantic Dash will see the team of experienced rowers tackle the gruelling transatlantic journey, which is expected to take several weeks. The funds raised by Cruising Free will directly benefit the Cystic Fibrosis Trust, which supports research and care for people living with cystic fibrosis, and the Paul Sartori Hospice at Home, which provides specialist palliative care services to individuals in West Wales.

“We are truly and eternally grateful to Port of Milford Haven who have provided us with the essential safety equipment needed to embark on our 3,200 mile journey from Lanzarote to Antigua. We are hoping not to need to use the flares or safety lines, but the satellite phone and VHF radio will keep us connected with land and loved-ones through the entire 2-month journey. Thank you!” said Polly Zipperlen, team member of Cruising Free.

Cruising Free’s row across the Atlantic will begin in January 2025, and the crew’s journey will be tracked in real time to allow supporters to follow their progress. The team is already actively fundraising and plans to hold several community events in the lead-up to their departure.

To learn more about Cruising Free’s Atlantic Row and how you can support their cause, visit their Linktree here.

Community

Pembs Agricultural Society’s Christmas Fair expands to an all-weekend event

Published

13 hours ago

November 15, 2024

Tom Sinclair

PEMBROKESHIRE AGRICULTURAL SOCIETY’S Christmas Fair will be an all-weekend event next month. The Christmas shopping extravaganza is all set to take place on Saturday, 14 December as well as Sunday, 15 December.

The Parkhouse building on the Haverfordwest Showground will be transformed into a Christmas paradise. There will be even more stalls this year with a wide variety of quality local businesses exhibiting as well as festive music, Santa in his Grotto and an outdoor food court.

Judith Roach and Emma Thomas, the event organisers, said, “We are excited to be able to announce that our Christmas Fair will be on for two days rather than just one this year. We continue to build on the success of last year’s event with twice the opportunities to attend and even more stallholders. It will be the perfect start to the festive season as the Parkhouse Building will be transformed into a one-stop-shop for those preparing for Christmas.”

The Fair will be open from 10am until 4pm and admission is free. Visitors will find unique gifts, handmade decorations, art and beautiful homeware. Some of the county’s very best food and drink producers will also have stalls to give visitors the opportunity to stock up on all their festive treats. From decadent chocolate brownies, fudge, festive spirits to Welsh cheeses, there’s something to tantalise everyone’s tastebuds. There will also be a range of outlets for ‘on the go’ eating and drinking.

One special guest at the event will be everyone’s favourite bearded gentleman in red – Santa will be taking time out from his busy schedule to attend the event. There will be a charge of £3 per child to visit Santa and all proceeds will go directly to Sandy Bear charity to support their work. Each child will receive a small gift from Santa as part of their visit. Parents can book in advance via the website: www.sandybear.co.uk/santa

Adam Thorne, Pembrokeshire Agricultural Society’s President is looking forward to the festive event. He said, “The Society would like to thank Judith and Emma for all the hours they have put in, voluntarily, to organise the two-day Christmas event. We’re delighted to be able to offer visitors the opportunity to do all their Christmas shopping whilst enjoying the festive atmosphere.”

Follow Pembrokeshire County Show’s Christmas Fair event page on Facebook for a full list of stallholders in the run up to the event.

Community

Officials announced for 2026 Eisteddfod in Pembrokeshire

Published

24 hours ago

November 14, 2024

Tom Sinclair

THE NATIONAL EISTEDDFOD returns to Pembrokeshire in 2026, and organisers have named the officials who will steer this major cultural event over the next year and a half.

With the artistic and local committees already established, meetings to finalise competitions and adjudicators are underway to ensure the List of Competitions is ready by spring. Committee members have also been voting over the past weeks to elect key officials for the Executive Committee.

John Davies, former leader of Pembrokeshire County Council, has been appointed Chair of the Executive Committee. Known for his deep connection to Pembrokeshire and extensive experience with national organisations, Davies aims to make the Eisteddfod a true community event, welcoming involvement from all corners of the region.

Tegryn Jones, Chief Executive of Pembrokeshire Coast National Park, takes on the role of Deputy Chair (Strategy). With a strong passion for Welsh culture and language, Jones brings a wealth of experience working with local communities, visitors, and volunteers across three counties.

Deputy Chair (Culture) is Carys Ifan, Director of Canolfan Egin and a seasoned cultural organiser. Based in Llangrannog and originally from Llandudoch, Ifan has led numerous artistic and community projects across the region.

Cris Tomos, a community development veteran with over 30 years of experience, will lead the 2026 Eisteddfod Local Fund. Working with PLANED, a community development charity, Tomos has supported countless community enterprises and co-operatives in Pembrokeshire, Ceredigion, and Carmarthenshire.

Non Davies, recently elected as Executive Committee Secretary, brings extensive cultural management expertise as Ceredigion County Council’s Corporate Manager for Culture. Having chaired the Cardigan Local Fund Committee for the 2022 Ceredigion Eisteddfod, Davies is well-versed in managing cultural projects.

National Eisteddfod Chief Executive, Betsan Moses, said: “We’re looking forward to working with John and the team over the next few months as we prepare for the 2026 Eisteddfod.

“There’s almost a quarter of a century since the Eisteddfod was last held in Pembrokeshire, and we’re very much looking forward to returning to the area. 2026 is an important year for us as we celebrate 850 years since the first Eisteddfod was held in Cardigan Castle in 1176.

“We’re looking forward to working in a new way within a catchment area which includes parts of another two counties, which is, of course, a chance to work with local people in Ceredigion and Carmarthenshire again.”

Further announcements are expected in the coming weeks, including the sale of competition prizes and opportunities to donate the Crown and the Chair.

The National Eisteddfod will be held in Llantood from August 1–8, 2026.