ME Fundraiser: Ryn Stevens27 October 2021 London School of Hygiene & Tropical Medicine London School of Hygiene & Tropical Medicine https://lshtm.ac.uk/themes/custom/lshtm/images/lshtm-logo-black.png
Sally Callow, owner and creater of social enterprise MR Foggy Dog, has been fundraising for CureME at LSHTM for over two years. The CureME research team is at the forefront of participatory epidemiological, clinical and laboratory research into ME/CFS in the UK. Sally and Ryn Stevens formed a friendship and support base as they both live with Myalgic Encephalomyelitis (ME). Ryn Stevens and her husband John created a flower stall on their driveway to raise money and share information on ME/Chronic fatigue syndrome (CFS) and CureME research. In this blog, Ryn shares how ME has affected their life and how the community came together to support their stall.
With ME Foggy Dog, Sally Callow has been a great support, knowledgebase, and sounding board for me and my husband John, especially over the past seven years of living with ME. Having first met in person some years ago on one of Foggy Dog's world awareness tours and fundraising campaigns, Sally and ME Foggy Dog have always been there for us, becoming firm friends who totally understand my ME.
Then Sally, through ME Foggy Dog, introduced us to CureME, the science research team behind discovering what ME/CFS actually is and how it affects our bodies. I'm hopeful that their work will enlighten those who misunderstand or doubt our illness as the life-changing disability it is.
For too long, I had felt upset and disconnected from how my life used to be. I had lost my health, career, spontaneity, and a close 'friend' who dismissed my illness. It took me several years to stop grieving for who I used to be and start learning to live my new life with smaller, more achievable tasks, and dealing with the changes that came with having ME.
Plants, flowers and wanting to look at, or be in a pretty garden when able, became more of a tonic to me in my life. I also wanted to show thanks and support to Sally, ME Foggy Dog, and CureME for their great work for those affected by ME/CFS. I kept having the same thought; how can we help bring awareness and financial support to these amazing organisations? John and I couldn’t do any of that from our own pockets, on a regular basis, or on our own. But with support from others, maybe we could help. Maybe my own tonic could be a tonic to others too?
My plant stall idea was born. Living beside a busy road with high footfall, I hoped we were well placed to raise awareness and money. But how to make this happen when ME hits my body and brain so hard? For me, time, encouragement from others, accepting or asking for help, and lots of sleep and pain meds are how. With small, bite-size periods of work (and sleep for me) from John on an old donated BBQ, a can of blue spray paint in ME Foggy Dog's shade, bits of wood and Duct Tape, our plant stall was created. Sally gave us permission to use ME Foggy Dog's logos, and she sent us leaflets, information sheets and wrist bands to add to the stall. Notices were added on the three ways to pay (QR code, bank transfer or cash through our letterbox) before it went out to the front of our property boundary for its first summer job!
Over the summer, from the first to last day of our stall, my Aunty Anne kept us supplied with seemingly endless plants from cuttings and seeds, added to by friends and previously unknown new neighbours. Plants were priced between 50p - £10. Aunty Anne also donated two larger plants, which were sold individually on local selling sites, raising over £100 for us.
People donated earthenware and ceramic plant pots to sell and plastic pots to grow plants for future sale. John would often drive to homes to collect donations for the stall. Fashion jewellery, gardening books, framed prints were also donated. Anything we could not sell was either donated to a local charity or recycled locally.
Over the summer, people would stop at the stall to read the information about ME awareness and research, and talk to John or me and ask questions. Sometimes they would mention that they know someone with ME so were aware of the stigma surrounding the illness.
John did most of the heavy lifting for the stall, but he also had a never-ending supply of encouragement and praise for me and what we were all managing to achieve, for how generous people were with their money, time and donations. Who doesn’t thrive on encouragement and praise? I certainly do, and it made me smile often, made me feel ‘well’, and so thankful to have this wonderfully humorous, generous man beside me, leading us through my illness together.
Our family, community and friends supported us so much with this stall, as did the many visitors to our community; thank you, everyone! Our thanks and pride go to everyone who helped us, donated, purchased items, and stopped to read a poster, spoke with us or took a leaflet. Thank you, thank you, thank you, to Sally, ME Foggy Dog, and CureME for your continued efforts in raising awareness, fundraising, advocating, and producing and enabling excellent research into ME/CFS.
Sally Callow commented:
“I was incredibly touched by Ryn and John’s suggestion of a flower stall. None of us knew what to expect or how this would go. ME Foggy Dog is a social enterprise that fundraises for CureME. Funds raised by Ryn and John for ME Foggy Dog will be put towards future fundraising awareness events in the hope of raising even more money for CureME. I have been blown away by Ryn and John's entrepreneurial spirit – looking forward to next years' efforts!"
If you have an idea and would like to talk to someone about fundraising for any of the important and varied work at LSHTM, please get in touch by emailing email@example.com