On Saturday 24 June, we celebrated the fantastic achievements of our dedicated fundraising volunteers at our second Fundraising Volunteer Awards Ceremony, held at the Adelphi Hotel in Liverpool.
Joining us as compere for the evening was Huntington’s disease ambassador and spokesperson Charles Sabine, who congratulated each nominee for their wonderful contribution to the Huntington’s community and shared his own experiences of raising awareness.
There were two awards up for grabs in the Most Inspiring Volunteer category, and one award available in the new category of Young Volunteer of the Year.
There were a staggering 17 nominees for Most Inspiring Volunteer and six nominees for Young Volunteer of the Year.
The winners, chosen by public vote from the group of nominees, were:
- Young Volunteer of the Year 2017 - Henry Vervoorts
- Most Inspiring Volunteer 2017 – Margaret Cairney and Mary Wormleighton
There was also a special discretionary award, Friend of the HDA, which was presented to volunteer Les Shan for his dedication to helping the HDA with his professional IT experience over many years.
Award winner Margaret Cairney said: “When I was contacted to say I had been put forward for the award I never dreamt I’d hear any more about it, never mind be invited to the awards in Liverpool and to actually go on to win! There are such great volunteers out there, I am just one of many. With or without an award I enjoy every minute of raising awareness and fundraising. I’d like to thank my friends, family and local community who support the events we hold each year.”
Winner Mary Wormleighton said: “I was thrilled to bits. There is no way could I have done it without the support of my friends and family. It was a really special night. The evening was a humbling experience as everyone in the room works so hard."
Huge thanks to all the winners, nominees and each and every person who raises funds and awareness of Huntington’s disease on behalf of the HDA. We couldn’t do what we do without you.
Thank you to headline sponsor Exemplar Healthcare, and award sponsors Nutricia and Diligence for making these awards possible.
Photos from the awards
Most Inspiring Volunteer
Joint Winner: Margaret Cairney
Dedicated supporter Margaret Cairney, from Nottingham, held a family fun day and fashion show – following on from the success of two similar events she has held before.There is no doubt Margaret has raised significant awareness throughout her local community, as she was presented with three large donations that others had raised from holding their own events. This is proof of Margaret’s hard work and commitment to raising funds and awareness. Margaret said: “I feel privileged to be nominated having seen through media what some people have done. “Doing the fundraising helps me deal with losing my father and two brothers who had HD. I have also met and made friends with a lot of people. Also it's nice to know my little bit helps families affected with HD.”
Joint Winner: Mary Wormleighton
Mary Wormleighton’s husband was diagnosed with Huntington’s disease in 1977 and, with the support of her friends and neighbours in Northampton, Mary immediately started fundraising. Over the years they have raise thousands of pounds to support people with HD.In 2016 Mary and her team organised a cream tea afternoon which included a treasure hunt, quiz and raffle. Throughout the year Mary makes marmalades, jams and preserves which provides steady income for her fundraising pot. When it came time for Mary to celebrate her 80th birthday, she asked for donations to be made to the HDA rather than gifts. As well as all the fundraising events she organises, Mary became a county representative for people affected by HD. Her door was open to anyone needing a listening ear, advice or someone to talk to. Mary said: “I am so fortunate to have many friends and family who support me. Sadly, my son has now developed the disease, and so we continue to do what we can to support the HDA. “I feel very honoured to be nominated for this award and the fundraising has given me a lot of enjoyment. It feels good to be raising money which is so important and answers my friend’s question 40 years ago, “what can we do?”
Natalie Alcock and Lynne Burgess
Over the last three years Natalie Alcock and Lynne Burgess, both from Wallsend, Tyne and Wear, have organised a charity bike ride in aid of the HDA.Following the success of previous events, they decided to do it all again in September 2016. Natalie and Lynne where overwhelmed by the support they received from family and friends who joined in with the challenge. The event took place in and around the Wallsend area of Newcastle, with 15 riders covering a 15km route. The pair said: “The support we have had over the years has been fantastic and as long as we keep getting that support we will be continuing on with the bike ride.”
2016 was a huge year both physically and emotionally for Annette Ablitt, from Portsmouth, as she secured a place in the London Marathon as part of team HDA. Annette never dreamed she would take part in a marathon, let along one the most famous of races in the world.Sadly in 2015 Annette lost her husband Craig but found training for the marathon gave her focus and structure. Fundraising and training motivated her to involve her children, friends and family as she asked them to donate to help her hit her fundraising target, as well as helping to plan and run fundraising events. During training runs Annette was able to connect with other people affected by the disease, and by wearing the HDA vest she was able to raise awareness and share her personal story. She has been inspired by other HDA runners and their personal achievements. Annette said: “I feel last year I was able to reach out more to the HD community and found, that although it is a cliché, it is good to talk – who knows what the future holds, but I know I am not alone.”
Towards the end of 2015 Chris Aldous, from Hampshire, lost another family member to Huntington’s disease. After dealing with the sadness of his loss he wanted to set himself a massive personal fundraising challenge for 2016.Chris, who is scared of heights, decided to tackle his fear head on in the name of fundraising and booked onto a 15,000ft skydive. As well as the terrifying skydive, Chris took part in his first ever Great Newham Run in London, a 10k race finishing at London’s Olympic Stadium, and his ninth Great South Run, where he pounded the pavements of Portsmouth over 10 miles. Chris said: “I never been a nominee for any awards and being asked to be one for HDA is one of the proudest moments of my life. To be a nominee for the Inspirational Volunteer of the year is a true honour and it’s really cool to be recognised. “It’s an honour to promote the HDA for what they do for everyone who sadly has this horrible disease. I will continue fundraising for the HDA, my family and everyone else who is affected by this horrible disease.”
Soon after receiving the news he had the Huntington’s gene, Josh Beasely, from East Yorkshire, signed up for a gruelling 40-mile trek across the Swiss Alps to raise awareness and funds for the HDA. In just 3 days, Josh navigated difficult terrain covering Switzerland, France and Italy.In the lead up to the trek, Josh was kept busy planning a fundraising evening and secured a generous donation from a local business. After the challenge, he was awarded a grant from the Morrison’s Foundation to boost his fundraising total. Josh said: “I'm over the moon to be nominated for an HDA volunteer award. Since my diagnosis of Huntington's disease, I have had to turn a bad situation into something positive for not only myself but other people. It gives me such a sense of achievement and pride that I can help other people in my situation by raising money for HDA and also, just as importantly, raising much needed awareness. “I will continue to raise money for Huntington's in memory of my mother who passed away from HD when I was 10 and many others who have lost loved ones to this awful disease. I have not yet fully decided on my next fundraising adventure for HDA but I have a few ideas in mind and I'm very excited about it.”
Gail and Jeff Brook – Sarah’s Dream
Gail and Jeff Brook, from Staffordshire, have a Goldwing 1800 motorcycle called Sarah’s Dream. The bike is named after their daughter who sadly passed away in October last year after her battle with HD.At Christmas, Gail and Jeff dressed as Mr and Mrs Claus and visited children around the streets of Tamworth. Local supermarkets kindly donated sweets for the children and parents gave generous donations so that they could have photos taken sitting on the bike. They secured a green token collection in their local Asda and won the donation as well as selling their own bespoke Sarah’s dream badges. At Sarah’s funeral, which took place towards the end of last year, Gail and Jeff requested that only close family members purchase flowers and that others sent donations to the HDA. Their other daughter, Victoria, secured a donation in memory of Sarah from her employer Sainsbury’s. The family were dealt another sad blow when they discovered that Sarah's son also carries the HD gene. Gail and Jeff are determined to keep raise awareness and funds in their local community. The couple said: “We were very surprised and feel honoured to be put forward as nominees for the most inspirational volunteers of the year.”
2016 was a turbulent year for Louise Gilham from Doncaster, and her family, as her father entered the end stages of his battle with Huntington’s disease.Louise decided she wanted to raise funds for the HDA by using her craft skills. As the year was coming to an end, she chose to create children’s elf doors for Christmas, and asked for a £10 donation per door. Each door was hand painted and included a small elf which would look out each day for good behaviour and at night would go through the magical door to report back to Father Christmas. Louise said: “I feel honoured to be nominated as an inspirational fundraiser. I feel that it enables me to give something back in return for all the support the Huntington’s Disease Association has given my family. “I feel my father would be proud and encouraging me to make a difference.”
Jackie Harrison from West Yorkshire, a full-time carer for her brother Mark who has HD, started a hugely successful fundraising and awareness campaign called #Hounds4Huntingtons in 2015. With the help of some close friends they created small stuffed dogs in return for a donation.Inspired by her own hound, Sybil the border terrier, Jackie has been sending small stuffed ‘mini Sybils’ around the world, spreading awareness of the disease far and wide in a new campaign called #Sybilontour. Jackie said: “Being nominated is very kind and it is down to the help and participation of others that it has been such a success. “Fundraising and awareness raising are very important to me and I love that #sybilontour is reaching around the world as she pops up in a new spot.”
While Daniel from Dorset was carrying out a building project for a young family, he discovered that they were affected by Huntington’s disease. After the initial shock and sadness he decided to learn about the disease, as he had no knowledge of it beforehand.He decided to try and help by fundraising for the HDA and signed up to take part in the Bournemouth marathon. Having never been much of a runner, Daniel started the gruelling process of training four to five times a week. In between the hours of training he organised a number of fundraising events, ranging from car boot sales, bake sales and film club nights. Perhaps the most memorable was holding a back wax party at his home - unfortunately it was his back that got waxed. Ouch! Daniel said: “I have to admit the marathon training and the fundraising have been one of the most moving and humbling experiences I have ever been involved with. I received many messages from people who are affected by HD throughout my journey thanking me for what I was doing. This inspired me to carry on and push my body to its limits so that I didn't let anyone down. I will now be a strong Huntington’s supporter for the rest of my life.”
Kerri, from North Yorkshire, comes from a large family that has been greatly affected by Huntington's disease. Her dad Clifford is the only one of six siblings not to have inherited the faulty gene and has been the driving force behind their fundraising for the last 15 years.Last year Kerri’s charity work started in February when a team of willing volunteers sold roses in local pubs over Valentine's weekend. They were not only passionate about raising funds but wanted to educate their local community about the disease. Spurred on by her success Kerri, arranged a family event named 'The HELP 4 HD Summer Fundraiser', which was designed to educate her local community and raise much needed funds at the same time. The town’s Mayor came to support on the day and the local radio advertised and attended the event too. Through hard work and huge local support, Kerri secured local produce stalls, games, live music, a brass band, birds of prey, dance performers and singers all for free. Kerri’s passion has inspired other local businesses to fundraise too – a local building society, local pubs and her local RAF group have all held charity nights, while her local branch of Marks and Spencer nominated HDA as their charity of the year. Kerri said: “I am totally overwhelmed to be nominated for this award and I feel honoured to be part of the HDA fundraising community. Myself and my family are so grateful to the HDA for all that they do. We will continue to raise funds and awareness until there is a cure and beyond. Fighting together, supporting each other.”
Yvonne Newnham, from West Sussex, is a Phoenix Trader, selling greetings cards and stationery. Over the last year, Yvonne donated profits from selling packs of greeting cards via mail order and at the HDA Family Weekend.Yvonne also harnessed her gift wrapping skills by giving demonstrations to a local ladies group, where the sixty-three women who attended were very generous with their donations. During HD Awareness Week 2016, Yvonne organised information tables in various David Lloyd leisure clubs in her local area. She also held a coffee morning at her home, ran a raffle, sold Phoenix cards and had a book stall. The event was well supported and a huge success. Yvonne said: “I am pleased to be able to make a contribution to support the wonderful work of the HDA and to help raise awareness of Huntington's. I was truly surprised to be nominated for an award!”
Wendy Pankhurst, form Bedfordshire, lives aboard a narrowboat called ‘Irene’. Whilst chugging up and down the Grand Union Canal, towing her roof garden behind her, she raises both funds and awareness.Every two weeks she moves to a new mooring and sets up a plant stall, which includes bedding plants, vegetables, tree saplings and herbaceous perennials, on the towpath with some HDA leaflets, stickers and an honesty cup. As well as using her green fingers to raise funds and awareness she runs a small business, Wendy Witch. She conducts hand fasting ceremonies (Pagan weddings) and baby naming ceremonies. She always takes her HDA collection box along to events and people have been incredibly generous. Wendy also reads Tarot cards and makes gift-wrapped magic spells aboard Irene, from which she donates a third of her profits to the HDA. Wendy said: “It was a lovely surprise to be nominated. “I love fundraising. It satisfies my need to grow plants as well as helping to raise money for a cause very close to my heart.”
Shaun Pheasey, from Stockport, was inspired to raise funds and awareness for the HDA when his father who has HD was in hospital with a chest infection. Once he was home the family had a visit from a social worker who had no knowledge of the disease – they had to tell her all about HD as she had never heard of it before.This experience led to a discussion with his friend Rachael and they decided to organise a charity event. The next six months were dominated with securing items for a raffle, tombola and auction. Their friend Paul came on board to help and sourced unbelievable auction prizes and set up a Just Giving page. Shaun, Rachael and Paul were able to book a DJ and venue for free, while all the staff who worked at the venue on the night of the event kindly donated their tips. This hard-working team were determined to raise as much awareness as possible and ensure everyone who attended was given an 'information pack' made up of HDA information leaflets and materials – not one pack was left at the end of the night.
Marion Smith, who lives in Spain, has been a dedicated supporter of the HDA for years. Her husband David and brother law have HD and sadly their father Vic passed away after his battle with the disease.Each of Marion’s fundraising events has received excellent publicity and has encouraged people with HD to contact her. It has also inspired friends and neighbours to organise their own events. Some of her most successful events have been a ‘Cake That, HD!’ bake sale, a tapas and sangria night, afternoon teas, charity lunches and quiz nights. The owner of the local radio station and newspaper attended her last quiz night and has agreed to publicise all her future events. She has certainly raised huge amounts of awareness locally. Marion said: “I am very flattered to be nominated for this award. It would mean such a lot to my family, who have been very supportive in all my endeavours. Our daughter is even asking her wedding guests in June to make a donation to HDA in lieu of wedding gifts.”
Tom White, who lives in Liverpool, has seen first-hand the invaluable work carried out by the HDA – we have been supporting his mum and uncle who were diagnosed with HD in 2011.Tom wanted to do something to raise funds and awareness, so he decided to undertake the famous London to Paris cycle ride, and gave himself just four months to train for this gruelling challenge. Having not done any serious exercise for a significant period of time he knew training would be tough. As well as the hours training, Tom’s fundraising began with an event in his restaurant, Maray, and collection boxes in various popular cafes and restaurants in Liverpool city centre. Tom had support from staff at the popular bar Filter and Fox, who attended his event and manned the bar with a special cocktail menu, while artisan baker Laura’s Little Bakery provided fantastic cakes. In the week before his cycle he added a discretionary £1 donation to the bills in his restaurant and gave guests the link to his fundraising page to raise awareness of HD and the work of the HDA. Tom found the cycle ride both enjoyable and gruelling in equal measure. Weather conditions were challenging but he was able to push through painful knees in order to experience the spectacular views travelling into Paris. Tom said: “The last few days were wonderful and cycling into Paris was one of the most amazing experiences ever, I’ll never forget it.”
John, from West Yorkshire, recruited a team of friends to take on the challenge of cycling along the Liverpool to Leeds Canal – a tough 127 miles across the cold, windy Pennines and over 91 locks!Along with his friends, John dedicated many hours planning the cycle and they funded it completely themselves. The support from his friends was hugely appreciated, not only by John but his family too, who were there to cheer the riders across the finish line in Leeds – alongside Johns’ step father Adrian who has Huntington’s. John said: “Fundraising for such a good cause really drives me to organise and participate in these sorts of events. The support I have had from the team at HDA whilst organising such events has always been fantastic. It's a pleasure to carry on fundraising and promoting awareness for this charity.”
Young Volunteer of the Year
Winner: Henry Vervoorts
Henry Vervoorts, aged 11 and from Nottingham, took part in a mile-a-day challenge for a whole month to raise funds for the HDA.
Last year Henry discovered that his father has Huntington’s disease. Understandably, Henry found the news hard to come to terms with, but soon after finding out, he decided to start raising awareness and funds. He wanted to do something positive, so throughout the dark, cold and rainy month of November he began the challenge of running a mile every day.
With the support of his mum and step dad, he ran before school, after school, and before bedtime – always wearing an HDA vest or T-Shirt so that the public could see why he was doing it. He was cheered on by his local community in Lady Bay, Nottingham, powered by the strength of social media – and regularly heard people shout “Go running boy!” as encouragement.
Henry ran with a reporter from BBC Radio Nottingham at 7am one morning and was interviewed as he ran. For his marathon mile on 26th November, He was joined by a large group of friends, players from Nottingham Rugby and his own rugby team Nottingham Moderns for a mass group mile run along the river Trent. BBC East Midlands Today attended and televised the run, also interviewing Henry and his dad. The awareness raised about the HDA to the general public was fantastic.
Henry now has other projects in the pipeline – although none of them involve running!
In August last year, four year old Bella-Rae Bowers, from North Yorkshire, took part in a 1.5k run to raise funds for the HDA. As well this she performed the well-known hit ‘Let It Go’ from the film Frozen at a charity event in Northallerton.
Bella-Rae decided to perform to show support to people affected by the disease and to show future generations that she would continue to support them and hopes a cure is found soon.
Bella-Rae was proud when she took part in her race and that people chose to support her, and was happy to be nominated for the award. She said: “I was happy about helping people like Uncle Ted and Auntie Carol.”
Leah Owens, who is eight and from North Yorkshire, played an important role in organising a large charity fun day in her local area.
Leah’s godmother’s family is affected by Huntington’s and Leah was determined to help her aunty Kerri to organise the event. Not only did she help with the preparations of the event she took charge of stalls on the day and sold #Hounds4Huntingtons keyrings.
Leah said: “I hope my aunty Kerri does this again so I can sell some more of those dogs! I could also look at selling other things to raise money to help people in Kerri’s family with the disease.”
Rhys Somerville – Junior Great North Run
Ten year old Rhys Somerville lives in the North East and enjoys sports in his spare time. He decided to take part in the 4K Junior Great North Run as his grandmother was affected by Huntington’s disease and he was determined to help raise funds for the cause.
Rhys trained very hard and was delighted to run a personal best time of 24 minutes. During the race Rhys wore a t-shirt with the HDA logo on it. After he crossed the finish line, having seen him wearing the t-shirt, someone he had never met came up to him to thank him for choosing to run for the HDA. Rhys felt incredibly proud of the difference he had made.
Rhys has been inspired by his fundraising and wants to do more; his experience has helped him to talk more openly about Huntington’s disease.
Rhys said: "Fundraising is important as it's for a good cause and every penny helps. Fundraising is good fun too. I feel very excited about being nominated as I have never been nominated for an award before."
Fifteen year old James Stonehouse, from Surrey, has supported his grandma with her fundraising for over ten years. James has learned a lot about fundraising over the years and decided he wanted to help his grandma raise even more funds than she had done before.
James took the lead in organising a silent auction, and took on a mammoth task to email over 500 local and national companies asking for donations. James managed to secure 70 lots for the annual Pyrford and Wisley Flower Show in July. The auction was a huge success and helped to raise a fantastic amount of funds for the HDA.