Every year we reach new heights, and every year we amaze ourselves with what we can achieve together. This year has been no different, as we continue to raise awareness of mitochondrial disease, push new boundaries in the search for treatments and a cure, and support the patients and families affected by it.
Support for mitochondrial disease patients
One of the ways we endeavour to improve the lives of mitochondrial disease patients is through our Lily Wish Fund, and what a success that’s been since we launched it back in February. As well as mobility aids, home adaptations and respite breaks, we’ve been able to grant some more unusual wishes such as a gym membership, contributing to making a wedding possible following a redundancy, and a camera for a budding photographer who discovered his talent at our Young Adult Weekend.
Still on the subject of money, understanding the benefits system can be stressful and confusing, which is why in April we welcomed our new Benefits Adviser, Chrissy, to the team. Although she’s only with us one day a week, with her vast knowledge of the system she’s already been able to alleviate the financial concerns of a significant number of mitochondrial disease patients.
The support we offer mitochondrial disease patients and their families is, of course, at the centre of everything we do, and our Family Weekend and Young Adult Weekend are the pinnacle of that support. True to form, this year’s gatherings were no different – even train strikes, traffic jams and unseasonal weather couldn’t keep people away!
The success of these events reinforces their importance to everyone in the mito community, and for that reason we’re delighted to announce that next year, for the first time, we’ll be holding a weekend exclusively to support our adult patients – watch this space for more information.
A Lily event is a special occasion
A Lily event is always a special night, and that proved the case with our side-splitting Comedy Night in February, our opulent, Orient-inspired gala ball in March, and our Fight Night in April – what an incredible display of bravery we saw at the Clapham Grand. We’ve got more amazing events coming next year too, and if you fancy stepping into the ring for next year’s boxing, we’re currently recruiting volunteers to fight mito – literally!
We launched our Expert Patient Input Committee (code-named EPIC) in October, because we believe that the key to finding treatments and a cure for mitochondrial disease lies with those living with the disease. An online committee made up entirely of mito heroes, EPIC is their opportunity to share their personal stories to help shape research, clinical care and treatments. The overwhelming interest we had in joining the first focus group goes to show how important it is for patients to be heard, and we look forward to more projects next year.
Lockdowns might seem like a distant memory to us now, but back in March it was great to see the NHS up and running with their first in-person Patient Information Evening since the pandemic, in Oxford, followed by a day event in Newcastle later in the year. It was clear from the attendance and distances travelled that everyone involved was delighted to see these informal gatherings back on the calendar, and we were just as delighted to be there in support.
In September we made national TV when I was awarded The National Lottery’s Local Health Hero Award at The Sun’s Who Cares Wins Awards. A wonderful opportunity to raise awareness of our work, it was also incredibly humbling, and credit must go to the whole Lily team because it’s their passion and dedication that makes our charity what it is today.
Tireless fundraising from all our supporters
Which leads me on to the amazing amount of tireless fundraising we’ve seen from the entire Lily community this year. Hats off to our dream team who raised an incredible six-figure sum at the London Marathon, and to every single one of you who has run, swum, jogged, walked, boxed, leapt, baked and otherwise pushed your boundaries for us – your efforts have helped us to raise a humongous £9.8 million to date. What a way to finish the year, and we’ve so much to look forward to in 2024, not least hitting that £10 million mark!
So on to next year... We’re busy working on a shiny new website so look out for that later in the spring, and we’re also excited to be partnering with Rareminds to offer a new free, confidential counselling service for family members and individuals impacted by mitochondrial disease. We’ll be welcoming Becky and Louise, and sharing more about this service, in January.
If you’re reading this and thinking your waistband feels a little tight after all that Christmas indulgence, don’t forget to get involved in our January campaign: instead of wasting your money on an expensive gym membership you might not use, why not sign up for a Lily event instead – we guarantee you’ll get your money’s worth and have more fun!
And finally, I’d like to wish everyone a peaceful Christmas, and send my thoughts to those of you who are remembering someone special at this time of year.
Liz and the Lily team x