When twenty-six-year-old Pippa Stacey from York was diagnosed with ME in 2014 she was determined to make a difference for the commuinity she was now a part of, starting with one Etsy page.
When first diagnosed Pippa had no idea what a future of chronic illness would look like. Her diagnosis raised more questions than answers and she felt like she’d lost her sense of purpose.
A few months later she realised how little funding her disease got and decided to take matters into her own hands. Pippa said:
“I can still remember the exact moment that the concept of Spoonie Survival Kits came to me. A few months after my diagnosis, full of listening and learning, I’d begun mulling over what I could do to raise some much-needed money for ME/CFS charities. I obviously couldn’t do any sponsored walks or runs or anything that involved physical activity beyond the mammoth remit of putting the kettle on, and I wanted to do something a bit different to the usual (albeit incredibly beneficial) care package schemes that are popular in the chronic illness community. I wanted to do something where I could simultaneously raise money for deserving causes, spread a bit of cheer, and ideally not completely destroy myself in the process.”
Pippa wanted to raise money while also spreading cheer to a commuinity of people that were often forgotten.
The idea of ‘Spoonie Survival Kits’ was born.
Months of careful planning and ideas were ahead of her. Pippa set up a GoFundMe page to cover the start up costs of the project in the hope of setting up an Etsy page where a high percentage of the sales income would be donated to charity while the remaining pennies were put straight back into the project. Her initial target was to raise £500.
She made twenty little bags to sell, designed for people with chronic illnesses with the aim of raising money for Action for ME. The kits sold out fast and were met with an overwhelmingly positive repsonse.
“Initially we made twenty little bags full of treats and goodies designed to appeal to people with chronic illnesses, raising money for Action For M.E. Back then I had no real idea of whether this was something that would continue into the future, but after seeing how speedily those first Kits sold and the positive response, I knew we were onto something. Over the next couple of years we developed hundreds of unique Kits, setting ourselves fundraising targets for a whole range of charities which we would hit and donate before moving on to our next chosen cause.”
Over the next few years hundreds of uniques ‘kits’ were created and Pippa set various fundraising targets for different chronic illness charities, once she hit each target she’d move onto another deserving cause.
By 2017 the ‘kits’ had been sent all across the globe and raised thousands of pounds for charities.
Over the years the enterprise has welcomed talented artists who have produced items for the ‘kits’ and the project has enabled flexible work experience for young chronically ill people who may have otherwise not been able to gain work experience.
In 2016 she was able to sustain and upscale ‘Spoonie Survival Kits’ and in 2019 released the ‘Spoonie Advent Calendars‘. The success of the work was reflected with the release of the ‘Dear Chronic Illness’ book in 2018.
Her efforts have made a huge difference to the ME commmuinity, by not only bringing joy to those recieving the ‘kits’ but also raising a whopping total of £8,382.57 for 15 different causes since the first sale in 2014. In total 1,159 ‘kits’ were sold via Etsy. Pippa’s fundraising has recognised across the chronic illness commuinity and her work has seen her short-listed for various awards.
The ‘Spoonie Survival Kits’ ended up making a huge difference and raising a lot of money!
This is not the last we’ll see of Pippa Stacey and her incredible work for people with ME. You can follow her work via her socials below.