Look back at 2020

Over the past 12 months, along with the rest of the world, the MND community has faced great challenges. The coronavirus pandemic brought a fresh wave of concerns for many people already dealing with the devastating effects of MND.

Throughout the year, the Association didn’t waver from its commitment to ensure that people living with and affected by MND had access to the very best support and care. We changed many of our ways of working – almost overnight – but the positive outcomes we’ve seen are now influencing our future work.

Committed to research and care

Our coronavirus hub became a one stop shop for information and continues to be regularly updated in line with government guidance. It also hosts our Ask the Experts videos featuring an expert panel answering specific questions.

Despite the economic uncertainty, we held our scheduled spring and autumn research grant funding rounds, but delayed funding decisions until the end of the year. Thanks to the amazing generosity of our supporters, we were able to maintain the level of care and research grants we had planned to give in 2020 and commit to funding 12 new research studies to start in 2021.

We are truly proud to have so many volunteers supporting our work. Around 240 volunteers helped to make over 3,000 phone calls to people living with and affected by MND in the first few weeks of the pandemic – 1,500 of those requested ongoing support from the Association. Our network of branches and groups embraced virtual meetings to continue their vital local support and, on many occasions, this led to an increased number of attendees thanks to the accessibility of the meetings. Our AGM, also held online, attracted 145 attendees.

Identifying a new need as the country lived in lockdown, we stepped up our support for those affected by the disease. We launched our Commitment to Carers in June and partnered with two charities to launch new avenues of support – memory and treasure boxes, and a counselling service – for children and young people affected by MND.

Raising awareness and funds

We couldn’t raise awareness of MND or encourage support without people affected by MND bravely sharing their stories. In 2020, more of you than ever did that. Former rugby star Rob Burrow was among our high profile supporters who inspired thousands of people particularly through his BBC documentary My Year With MND –  including his former teammate Kevin Sinfield who ran 7 marathons in 7 days in December and raised an astonishing £2.5 million to support both Rob’s family and the Association. The launch of Len Johnrose's Project 92 on Sky Sports also ensured awareness of MND continued to rise.

Faced with the cancellation and postponement of many key fundraising events, the Association quickly built a portfolio of virtual events. Mission 5000 saw 800 people raise an incredible £283,000, with other virtual events continuing into 2021. We are also very grateful to our partners, the Wolfson Foundation, the Garfield Weston Foundation and the Alan Davidson Foundation for their flexible emergency grants of nearly £240,000 to fund care and research. Our fantastic community of supporters, funders, donors, volunteers and fundraisers responded generously to all of our appeals allowing us to continue our vital work to support those affected by MND.

Keeping MND on the campaigning agenda

The Association was also quick to launch our #GetMNDonTheList campaign urging the Government to include people with MND on its 'shielding' list – entitling people with MND to extra community support. The foundations for both our Act to Adapt and United to End MND campaigns have also been laid and we will build on this work into 2021.

Working together

Collaboration between the Association and both My Name’5 Doddie Foundation and Darby Rimmer Foundation has continued to be a fantastic support for our care grants programme. With the help of the My Name’5 Doddie Foundation, the Association were able to award emergency grants totalling £39,987 to support people with immediate needs as a result of the pandemic.

The Association’s year ended as usual with the International Symposium on ALS / MND – but in 2020 the event was virtual. It became our largest, and most accessible Symposium to date. Over 1,300 delegates, including 60 people living with MND, from 48 countries across the world checked in to the virtual platform live during the meeting.

None of this would have been possible without your incredible support during these difficult times – we couldn’t be more grateful to you. As we move into an uncertain and challenging 2021, the Association is committed to ensure that people living with MND and those closest to them continue to have the support they need, whenever they need it.