Community Fundraising for LSHTM: CureME

In celebration of ME Awareness Week, we would like to thank Linda Hending for deciding to fundraise for CureME at LSHTM.

In 2016 Linda, who has ME, was feeling frustrated with the lack of research funding and support for people with ME, so she volunteered to get involved at the UK ME/CFS Biobank at LSHTM. This unique biobank, opened by CureME at LSHTM’s International Centre for Evidence in Disability, is the first in Europe and one of the first in the world, and is open to researchers globally.

Although the participatory study Linda had read about was fully recruited for at that time, she stayed in touch, and was delighted to be contacted in 2018 to ask whether she was interested in participating in a three-year study.

At her initial meeting with a Research Nurse in London, she mentioned that her 60th birthday would be in 2020, and so the number of her donations to the Biobank was therefore going to be limited. When told that she could continue to donate until her 61st birthday, she was relieved to be able to make all six donations required for the study.

This good news, that she could fully participate in research for ME, was the catalyst for her to record her experience and do something to celebrate.

With support from the CureME team, Linda set up her JustGiving fundraising page, linked it to the LSHTM JustGiving page, and asked her friends, family and networks to help her celebrate her big birthday by making donations to support CureME’s important work. In the summer of 2019 the team at CureME recognised Linda as a fundraiser on Twitter, and as the word began to reach people more widely in the ME community, they started to support her by making gifts on her page.

Linda is currently hosting a ‘Mini Quiz in Lockdown’ this week, as part of ME Awareness Week, sharing her fundraising page with her networks on social media to inspire people to make donations to CureME. Later in the summer, Linda hopes to run a Birthday ‘Tea & Cake Party’ as well as planning another quiz for Christmas 2020. At her summer tea party, she is hoping to be holding a ‘bring and buy’ book sale, and is asking for people to buy refreshments and take part in a raffle and other games, instead of buying birthday presents.

Linda is passionate about being able to partake in research into ME/CFS, and in addition to this, she has taken the lead by fundraising for the world’s first ME/CFS Biobank at LSHTM. 1 in 500 people suffer from ME/CFS and it is estimated that up to 250,000 people in the UK, and 17 million people worldwide, may have the condition.

Linda says: ‘If lockdown continues then my fundraising will just have to continue too.’

If you have an idea or a challenge that you’d like to take on, 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 alumni@lshtm.ac.uk.

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