Happy Birthday to us, Happy Birthday to us, Happy Birthday to Lyme Disease UK, Happy Birthday to us!
It’s our birthday and can you believe it; we’re 10 years old!!
As the saying goes, ‘time flies when you’re having fun’! But in our case it’s, ‘time flies when you’re helping others’!
Since Lyme Disease UK was founded in 2013, the charity has provided much-needed support to Lyme disease patients and raised widespread awareness across the UK.
Let’s get our birthday party started by taking a look at our top 10 moments over the past 10 years! Party poppers are at the ready!!
- The moment Lyme Disease UK was founded
Let’s take it back to the beginning; the day the charity was founded by Natasha Metcalf and Louise Dean on 5th of March 2013. A day that changed many of our lives forever!
Their reasons for setting up the charity? Both struggled with a lack of support and available information at the time of their diagnoses and recognised the need for a UK-based support network to help patients navigate their way through the complexities and controversies surrounding Lyme disease and associated illnesses.
The whole team at LDUK would like to take this opportunity to say thank you to Natasha and Louise for founding the charity. Without all of their hard work and sheer determination to improve the lives of other Lyme sufferers, we would all be in a very different place.
In the run up to founding LDUK, Natasha and Louise were both in the midst on their own battles with the illness, and devoting their time to helping others whilst juggling their own health struggles was an act of pure selflessness. They are both very special to us; our pioneers of the Lyme disease world.
2. Our first patient story video
It’s a tough act to follow, but next up we have the special moment in May 2013 when LDUK created its first patient story video! To date, the video has been viewed over 2,600 times and remains an important representation of the plights of Lyme sufferers.
The video displayed messages put together by UK and Irish sufferers, as well as their relatives. These messages were handed into the UK Department of Health on a day of protest, along with a petition. The goal was to urge the UK government to listen up and take action to stop needless suffering.
3. Organising an event at Scottish Parliament
LDUK’s awareness activities soared to new heights in June 2017 when we were invited to organise an event at Scottish parliament!
Alexander Burnett MSP kindly sponsored the occasion and lodged a motion entitled, “Lyme disease, a need to do more”, which achieved cross-party support and was debated in Parliament.
The drop-in awareness event was attended by around 100 people, including many Scottish MSPs, members of the LDUK team, doctors with experience of treating Lyme disease, patients, carers, and representatives from outdoor organisations.
Attendees learnt about tick bite prevention, testing, diagnosis, and treatment of Lyme disease. There were speeches from Alexander Burnett MSP who chaired the event, as well as our Chair of LDUK, Natasha Metcalf. You can watch Natasha’s powerful speech here.
4. Becoming stakeholders in the NICE Lyme disease guideline
A monumental moment came in 2018 when LDUK was invited to be a stakeholder in the NICE Lyme disease guideline writing process.
We commented extensively on the draft guideline, labelling it as ‘an inadequate tool for doctors and patients, seriously undermined by a lack of evidence’. We were pleased to note that some of our comments on the draft guideline were incorporated into the final version.
You can read our full response to the guideline here and read a summary of the key points via the graphic below.
5. Our first ever ‘Wake Up To Lyme’ campaign
In 2018, we launched our first ever ‘Wake Up To Lyme’ awareness campaign! It was a resounding success, and is now a regular fixture every May for Lyme Disease Awareness Month. Some of our most notable achievements from 2018 included:
- Sending out 500 awareness packs to members of our Online Community group, who distributed them to NHS clinics, vets, supermarkets, offices, restaurants, schools, and parks.
- Hosting a stand at the Arboricultural Association ARB show.
- Attending the World Lyme Disease Protest in London and taking stock of all the brilliant press coverage it received.
- Hosting a stand at the annual Bushcraft Show to raise awareness of Lyme disease and collect donations. Our Press and Community Outreach Manager, Julia Knight, gave a high profile interview at the event, which has since been viewed over 6,000 times!
- Seeing children across the UK making the most of our downloadable school packs, taking part in our poster design competition, and giving awareness presentations to their classmates.
- Taking part in multiple interviews across UK radio stations.
- Holding a Scottish parliamentary call after First Minister’s Questions, which received an excellent turnout and much-welcomed support from Scottish MSPs.
All in all, 2018 was a brilliant way to kick off our Wake Up To Lyme awareness campaigns and you can find details of our successive campaigns below:
6. Achieving charity status
Having already been active for 6 years, LDUK officially achieved charity status 4 years ago in 2019. We even have a number to prove it; we’re registered charity 1182212!
This was a pivotal moment for us, as it has meant that we can now receive gift aid on eligible private donations and corporate donations can be tax-deductible.
If you would like to read our full charity constitution, it can be found here.
7. Organising our first conference
Fast forward to June 2019, and it was time for our first ever conference!
LDUK was delighted to host a morning with Dr Joseph Jemsek MD at a hotel in Kensington, London. It was wonderful to have the opportunity to bring together so many members of the Lyme community to share their experiences of the illness, and hear from Dr Jemsek.
Over 140 patients and carers attended to listen to Dr J’s latest insights into diagnosis, treatment and recovery from Lyme disease and co-infections. The event was facilitated by Natasha Metcalf, Co-Founder and Chair of LDUK, and organised by former Trustee, Ann Gregson (photo below).
8. Taking our free awareness talks online
Like many other organisations, the pandemic brought about some unexpected changes for us: we took our free awareness talks online.
This was a new way of working for us, and we’re pleased to say that it opened many doors and allowed us not only to continue raising awareness, but to spread our important message even further.
Since then, we’re proud to have hosted online awareness talks for many major organisations, including the Forestry Commission, the Woodland Trust, Natural England, and Exmoor National Park!
Thank you so much to our Press & Community Outreach Manager, Julia Knight, for volunteering her spare time to ensure that thousands of people now know how to keep themselves safe from the dangers of ticks.
9. Our first fundraiser attended by hundreds of people
The autumn of 2022 saw LDUK’s fundraising activities flying higher than ever.
Lyme disease patient, Dan Duerden, organised a fundraising event with a record attendance. Around 400 young farmers took part in a speed shearing contest in Lancashire!
The Pendle YFC Speed Shear raised an almighty £10,000 for Lyme Disease UK, as well as much-needed awareness amongst members of the farming community, with studies proving them to be at highest risk from tick bites.
Dan and his family displayed our awareness posters and handed out our tick cards to inform and educate farmers from many different counties.
10. Our first ever long-term corporate partnerships
The year 2022 ended with an amazing announcement; the CMS Group selected us as their charity of the year for 2023 and 2024!
The CMS Group is an award-winning organisation of Architects based in Wiltshire, and this means that all of their fundraising efforts will be focused on LDUK for the next two years.
The decision to support us came about following a meeting set up by John Watling who’s a member of Team SeaSoar (the incredible team of men rowing 3,000 miles across the Atlantic to raise funds for us in 2024). Chair of LDUK, Natasha Metcalf, was invited to present to the CMS team, alongside John who spoke about his daughter, Yasmin’s, battle against Lyme disease.
This news meant so much to us as a charity, as it’s our first long-term corporate partnership (and hopefully the start of many more). We do not receive any funding from the government and rely entirely on donations from members of the public.
Amazingly, the CMS announcement was swiftly followed by the announcement of another corporate partnership! Scottish Woodlands chose us as their charity of the year for 2023!
Ralland Browne, Managing Director of Scottish Woodlands, explained: “We are very pleased to be supporting Lyme Disease UK throughout 2023 and look forward to seeing all the activities that our staff will take part in to help raise awareness of this awful disease and raise funds for the charity to help them continue their great work. The company is well aware of the danger of Lyme disease, and has supported efforts to highlight it through our Tick Recorder App – launched in April 2018 and refreshed last spring.”
These are just a selection of some of our greatest moments from the past 10 years, but there have been many more!
Thank you so much to everyone who has offered their support to us, ordered our awareness materials, donated their money or their time to help us, shared our social media and website information, and taken part in events and fundraisers in allegiance to LDUK. We couldn’t have done it without you!