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.”
New Quay dog charity supported by national company
A CHARITY based in New Quay, Ceredigion, that rescues and rehomes German shepherd dogs, is celebrating securing backing from the charitable arm of one of the UK’s biggest and most successful independent pet food companies.
The Burns Pet Nutrition Foundation, part of Burns Pet Nutrition, a family company in Wales that makes specialist foods designed for the health and well-being of pets, has unveiled three charities it will support in 2018.
One of these is the UK German Shepherd Rescue, a rescue charity made up of volunteers who donate their free time to helping rescue and rehoming unwanted German shepherd dogs and puppies throughout the UK.
Suzanne Syers, founder of UK German Shepherd Rescue, said she is looking forward to partnering with Burns on many levels.
Suzanne said: “UK German Shepherd Rescue are thrilled to be chosen as one of Burns’ Charities of the Year for 2018, and are grateful for the package of support from Burns which will help us immensely. We are looking forward to developing a strong partnership with everyone at Burns and also to benefit from the nutritional advice and support that they can bring to help improve the quality of diet (and overall wellbeing) of the dogs in our care.”
The other two charities backed by Burns in 2018 are: Forever Hounds Trust, which matches greyhounds and lurchers to happy homes; and Dogs for the Disabled, an Irish charity that trains assistance dogs to assist physically disabled children and adults to carry out a range of practical tasks.
The Burns Pet Nutrition Foundation has run the Burns’ Charity of the Year since 2015 in addition to other community schemes including Burns in the Community and Burns by Your Side, a scheme that helps school children improve their literacy and communication skills with the aid of trained volunteers and their reading dogs.
The chosen charities will receive free, healthy pet food which has been developed by Veterinary Surgeon, John Burns and has been feeding happy and healthy pets since 1993. The charities will also receive expert advice from Burns’ team of in-house nutritionists, joint promotional opportunities, and in some cases, financial donations. These new charities will replace the two charities it supported this year: the National Animal Welfare Trust (NAWT) and Appaws for Autism.
John Burns, Veterinary Surgeon and founder of Burns Pet Nutrition, said: “Myself and the Burns Pet Nutrition team are extremely passionate about supporting and giving back to the community in any way, shape or form possible – and the same goes for charities in need of the support they aren’t currently receiving.
“We are looking forward to working with the selected charities throughout 2018 and, hopefully, they will feel the benefit of the support Burns Pet Nutrition can offer. We’re proud to be entering our third year of running Burns’ Charities of the Year, and we look forward to the years to follow.”
New Sensory Room for Aberystwyth respite service
A FANTASTIC facility is ready to use in Aberystwyth which will aim to benefit the disabled within the community.
Bryn Siriol, a respite service for adults with learning disabilities located on Fifth Avenue in Penparcau, has now opened a new sensory room for those with learning disabilities throughout Ceredigion and is the result of a three-year project.
The Herald spoke to Karen Dagg, who had been the registered manager at Bryn Siriol for seven years.
Describing the sensory room and its benefits, Karen said: “The sensory room provides a ‘quiet’ room where the people we support can relax. The people using our service have varying support needs all have a learning disability and some have physical disabilities.
“The sensory room is now equipped with fibre optic lights, bubble/light machine, projector, glitter ball and a water bed. The room is accessible to people who are in wheelchairs.”
She described the journey that was taken to open the sensory room: “The sensory room has always been a dream for myself and the staff at Bryn Siriol. A few years ago we were fortunate enough to receive a bequest from Mr Williams, whose daughter Thelma used to use the respite service before moving into supported living in the Cardigan area.
“The money Mr Williams left to us was enough to purchase the sensory chalet, have it erected and for some of the equipment, however there was a considerable shortfall.
“The shortfall has been possible due to the hard work of the staff team at Bryn Siriol doing car boot sales with items generously donated by the residents of Ceredigion. Also some of the staff from CTLD (Local Authority) did a sponsored walk.”
“How important do you feel it is for Bryn Siriol to have such a facility?” we asked.
“The sensory room will be available to all people with a learning disability and this gives them the opportunity to enjoy the facilities as well as meeting other people from within the area. As far as I am aware there is not another facility like this within Ceredigion.”
Karen told us how successful the sensory room had been so far and how she thinks it will bring the community together.
“The sensory room has been used by people who access the respite service and there has been fantastic feedback not just in words but in the faces of the people with profound disabilities who are unable to communicate verbally.
“The sensory room has only been open since October 4 and we are anxiously waiting for people from outside of our service to enjoy the facility.”
Bryn Siriol will be holding a tea party on November 8 at the service. People are welcome to go along and join them for tea and cakes, as well as to look at the sensory facility.
Going for Growth event helps businesses reach new markets
FOOD CENTRE WALES recently hosted a very successful ‘Going for Growth’ event to help local food and drink businesses to focus their attention on developing and reaching new markets.
The event was well attended with over 70 attendees, mainly consisting of local food and drink producers as well as other business support agencies.
In extending a welcome to everyone to Horeb, Leader of Ceredigion County Council, Councillor Ellen ap Gwynn, said: “The food industry is one of the main industries in the County, with some 3,700 people working in it and, of course, based on our excellent agricultural products. Some of the most strategic and iconic companies of the food sector in Wales have sites in Ceredigion, for example, Rachel’s, Dunbia (formerly Oriel Jones), Tŷ Nant and Volac. Horeb Food Centre has served most of the Ceredigion food and drink companies since it opened in 1996. We are very pleased that the Centre has also successfully provided services to many other companies across Wales and beyond.”
Rachel Rowlands, founder of Rachel’s Organic, opened the event by sharing her experience of growing a food business. Welsh Government presented the latest industry research data to help businesses identify potential growth areas for their businesses. Ruth Davies from Cwm Farm, who shared her experience of product development, supplying Selfridges and exporting.
Arwyn Davies, new Business Development Manager for Food Centre Wales who will talk about how food and drink producers can benefit from the support offered by the Food Technologists and the HELIX project. The morning finished with Morrisons buyer, Matt Trigg, explaining what they look for in food products and how to get onto their supermarket shelves. He also met with many of the producers for private meetings in the afternoon.
Councillor Gareth Lloyd, Cabinet Member with responsibility for Economic and Community Development highlighted the important role of Food Centre Wales in the food and drink industry in Ceredigion, saying, “This event goes to show how valuable Food Centre Wales is for small and medium businesses. I’m certain that local food and drink businesses were inspired from the Going for Growth event where they were treated to experience, knowledge and advice. We’re proud of the high standard of our locally produced food and drink within Ceredigion and are enthusiastic about how we can show support in local businesses to flourish. I’m very much looking forward to the exiting developments in the food and drinks industry in the future.”
The delegates enjoyed a lunch of locally produced food incorporating many food producers who have received help from Food Centre Wales. The afternoon started with attendees participating in a tour of the Research and Development building, followed by 1-2-1 sessions with Food Technologists, Matt Trigg and other business support Agencies – Business Wales, Landsker, Finance Wales, Antur Teifi, Menter a Busnes and Lantra.
The event was organised in collaboration with Cywain and the LEADER groups – Arwain Sir Benfro (Pembrokeshire), RDP Sir Gâr (Carmarthenshire) and Cynnal y Cardi (Ceredigion).
The HELIX project is a Welsh Government initiative designed to help develop the food and drink industry in Wales take advantage of the much needed funding available to help their businesses grow in the marketplace. New and existing small and medium enterprise food and drink manufacturers are able to access bespoke assistance from food technologists that is specific and tailored to the individual business.
If you are a food or drink producer and would like to receive help from Food Centre Wales, phone 01559 362230 or email firstname.lastname@example.org.
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