It has been a big year at Findacure HQ. As we prepare to close the office for Christmas, it is hard not to look back at a rather eventful 2019 with a mixture of disbelief and a pride: disbelief that half the things that happened actually occurred this year, and pride at some of the charity’s achievements and the work of our beneficiaries. So, for the final blog of the decade, we though we should look back at our year, before we get too excited about the adventures to come in 2020.

Funding success

Obviously the biggest moment of 2019 for Findacure was securing our National Lottery Community Fund grant for our patient empowerment programme.  We put a huge amount of effort into the bid for funding and were thrilled to receive the support for the project that began in July this year. The grant runs for a three-year period, providing a significant proportion of the funding we require to deliver our core patient empowerment work: workshops, peer mentoring, webinars and e-learning portal. The funding also gives us the chance to improve the integration of our training, and hopefully you have started to see the benefit of this toward the end of the year.

Findacure has never secured a large multi-year grant before, and it has provided more security for the organisation, and allowed us to plan the best way to support patient groups in the coming years. We hope that everyone in our community will feel the benefit of this in 2020 and beyond.

 

Patient empowerment

It has been a big year for our patient empowerment, in part due to receiving this funding. This year has seen our first ever workshop focussed on the ways that patient groups can “Support your patient community”, the return of Findacure’s webinars (with a new one planned for January), and a peer mentoring programme enhanced with small group bespoke training sessions throughout the year. The Lottery Funding has also supported us in developing the last two workshops of the year on rare disease patient registries and drug repurposing, both of which have already been turned into two of our most detailed and engaging guides on the e-learning portal. This approach, where our in-person training is followed up and supported by digital content, is crucial to our new strategy as a charity. It will provide greater accessibility to our training, allowing more groups to access support, but also allow groups to build on the training received during our face-to-face events.

An evolving team

Of course, I couldn’t review 2019 without talking a little about the evolving team at Findacure. This year has seen some big changes in the Findacure team, after a period of stability for the charity. Over the year we have seen the departure of Katie, our first ever Fundraising Officer, Taryn, our first Communications Officer, and the long serving Libbie Read – Findacure’s fourth ever employee! Obviously all three contributed hugely to the charity’s work, and we’d like to thank them again for their time with us.

While departures are always hard to manage for such a small team, in the last few months we have been very excited to welcome Philippa Norman and Laura Thompson-Harper to Findacure our Projects Officer and Fundraising Manager respectively. We have also welcomed two new trustees (Jo Pisani and Sophie Costello) to the charity this year, and established a new and very helpful patient engagement committee (learn about them here and here). With our new team in place, our advisers enthused, and the promotion of Mary Rose Roberts to Head of Operations, Findacure is set for an exciting 2020.

Uniting the rare community

While training patient groups is of the utmost importance, we also want to give them the opportunities to meet the researchers, doctors, and companies who can help them succeed in their mission. This year has seen some of our most successful events designed to build a more vibrant rare disease community. Our annual drug repurposing conference saw 110 delegates descend on London to learn about some of the best work in the rare repurposing field. The talks were excellent, and really highlighted the power of a collaborative approach to drug development. This theme was echoed at October’s Manchester Rare Diseases Showcase. The event was our largest Showcase event to date, and the atmosphere in the conference room and patient group exhibit was fantastic throughout. This year also saw a milestone for Student Voice Prize, with our first ever winner from beyond the UK.

Research

As if all of that wasn’t enough, this year has also seen success in the field of rare disease research! The MCDS-Therapy clinical trial, on which Findacure is a partner, has officially launched its UK recruitment, and is progressing well. We also couldn’t review the year without highlighting the successful completion of the DevelopAKUre clinical trial – this has been a huge undertaking for the AKU Society and their many collaborators, and the outcome leaves AKU patients with a real hope of receiving the first ever licenced treatment for the condition in the not too distant future.

Thank you to everyone who has helped and supported Findacure in 2019. Have a great Christmas, and brace yourselves for an exciting year in 2020.

Looking back at 2019 – a year of change for Findacure

by Rick Thompson time to read: 4 min
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