In 2022/2023 our income from Community Fundraising and Events saw a huge boost bringing in £511,334.68 an increase of 16.2% on the previous year.

Our largest event in the calendar year is the TCS London Marathon which returned to the streets of London in October 2022 with our runners in #TeamHDA raising a brilliant £104,593.37. We expanded our offer to our TCS London Marathon #TeamHDA runners with activities over the weekend of the marathon including a pre and post-event meet up in central London. Thank you to everyone who took part and cheered #TeamHDA on whether it was on the TV or in person. At the other end of the country, we were also thrilled to see our #TeamHDA take to the streets from Newcastle to South Shields in the Great North Run raising £13,805.92 towards our work. 


As ever, our supporters showed imagination and ingenuity when it comes to organising their own fundraising challenges to raise funds. The fabulous Ladies Who Dare who took part in a skydive, Jess Webb not only organised a charity ball but also organised a collection at the Goodwood Super Car Day and was also the star of the BBC One Show, “One Big Thank You” in recognition of her amazing fundraising achievements for the Huntington’s Disease Association. We have an energetic lot of supporters who trained and ran for various challenge events including climbing Kilimanjaro, the Yorkshire three Peaks, the Rustbox Rally, the South West Coast Path Challenge and the Peaky Ramblers who covered the distance from Alnwick Castle to Bamburgh Castle. 


We would also like to thank those who invite the charity to be a part of their life celebrations, to the numerous brides and grooms and those celebrating wedding anniversaries raising funds for our work, thank you for allowing us to be a part of your special day. 


Big thanks go to the community groups who supported our work. St George’s Golf Club in Surrey raised over £30,000 at their Captain’s Golf Day, Helston Cober Valley Rotary Group raised £3,000, and the Harvel Pedigree Whippet Racing Club raised over £1,000 from their pedigree whippet racing day. Our thanks go to all the choirs, churches and schools who raise funds and awareness of our work. 


Fundraising activities

#HD800 series

Our #HD8000 challenge series continued raising over £10,000 over the course of the year. Our huge thanks to everyone who took part in #HDMove, #HDHike or #HDBike. 


Fundraising awards

In May 2022 we were thrilled to welcome people back to the Liverpool Blu Radisson for the Huntington’s Disease Association Awards, ably hosted by our friend, Charles Sabine. We introduced two new categories for this year, the Excellence in Health or Social Care to recognise the fantastic efforts of professionals who take the time to understand the complexities of Huntington’s disease to ensure that those in their care receive the best support was awarded to Alex Fisher. The Recognition award was presented to Mauveen Jones and Doreen Spiers in honour of their hard work in the earlier days of the charity. Our congratulations to everyone who was nominated and our winners. It was wonderful to see you all there on the day. 


Christmas appeal

Our first Christmas Appeal took place in December 2022 raising a wonderful £11,509.30 to support our work. Our thanks go to members of HDVoice, who helped us to shape our appeal letter and share their own stories of how to celebrate Christmas whilst living with Huntington’s. 


Corporate partners

We were delighted to continue our work with the Westerleigh Group and our thanks go to their many employees who took to the skies, ran or baked cakes raising over £40,000 towards our work. Our thanks go to other corporate supporters over the year including Strategic Dimensions who donated £2,000, Wixroyd Group who donated £3,700 in support of a ball organised by a supporter, the Phoenix Life who matched their employee's fundraising efforts with a donation of over £1,100 for the charity, the Ice Co who donated £650 following their annual family fun day, Lewis and Cooper in Northallerton continued their support with instore fundaising activities raising over £500, and Pyramid Steel whose monthly support of our work helped, to raise over £600 in the year. In total our corporate income increased 34.9% on the previous year. 

Individual giving

Individual giving saw a 6.5% increase on the previous year with all donations in this area hitting £351,276.38. We now have over 534 regular donors who donated a total of £79,710.62 in the year. Donating to our work in this way is a cost-effective way for the charity to receive donations and helps the charity to plan our work. We have carried out a lot of work across individual giving across the year including an improved stewardship process for in memory donors and new fundraising products. It can be a nervous time for a charity when introducing a new fundraising product; we are conscious that we do not want to overload our supporter base, but we also want to be able to offer fundraising products which will engage and attract funding to support our work. We took the decision to introduce a charity lottery, working with Sterling Management and being part of their Unity Lottery. Our players have helped to raise £17,732 in its first full year. Thank you to everyone who has taken part in the lottery. 


Trusts and Foundations 

Over the course of the year we saw a 64% increase on the previous year on income from Trusts and Foundations and Statutory. We are grateful to those Trusts and Foundations and Statutory partners whose support helps us to provide vital advice, information and support for people affected by Huntington’s disease. 

In August 2022, we were delighted to be selected as one of 12 charities to benefit from the 2022 Jingle Jam charity gaming event. Jingle Jam is the largest charity gaming event in the world and is driven by a community of volunteers, content creators, games companies, and charities all coming together over a two-week period between 1 December – 14 December 2022 to raise money. The charity was awarded £240,924.52 in support of our continued support and development of the Huntington’s Disease Association Youth Engagement Service (HDYES)

In February 2023 a full proposal worth £418,360 was submitted to the National Lottery Community Fund. This funding is to support the continued development of HDYES over the next three years. 

2023 saw big changes as Clinical Commissioning Groups evolved into Integrated Care Boards/Systems. However, despite this we maintained our grant agreements for all our contracts as well as with Birmingham City Council and Dorset Healthcare University NHS Foundation. In addition, we received cost of living uplifts for three of our grant agreements as well as being successful in applying for a grant award of £31,275 from Liverpool City Council for our work support Clinically Extremely Vulnerable community members.  

In 2022-23 we hosted our inaugural online Trusts and Foundations Engagement event. This virtual event brought Trust and Foundation grant-makers and funders closer to the people who their funding supports. Three speakers shared their different perspectives of Huntington’s disease and the work of the Huntington’s Disease Association. We look forward to planning more of these events in the future. 

Putting people with Huntington’s disease at the heart of our work is key to letting the world know about Huntington’s disease and its effect on individuals, families and communities. We will continue to work collaboratively with staff and supporters to share their stories and powerful messages.


We monitor the return on investment on all our fundraising activities and meet or exceed all statutory and regulatory obligations. 


We are members of the Fundraising Regulator and the Chartered Institute of Fundraising following best practice guidance laid down by them as well as the Charity Commission guidance for Charity Trustees (CC20). We comply with the Privacy and Electronic Communications Regulations (PECR). The Huntington’s Disease Association recognises that we may work with people in vulnerable circumstances so protection of vulnerable people is something we take seriously. We adhere to the Chartered Institute of Fundraising's guidance – ‘Treating Donors Fairly – responding to the needs of people in vulnerable circumstances’.


For the year 2022/2023 we did not receive any complaints about our fundraising practices/approaches. 

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