Mummy With MND
1855. Emma Moss
Emma Moss, from Northampton, is a former deputy headteacher and Motor Neurone Disease (MND) campaigner who has helped secure a £50 million fund from the Government that will pioneer research into finding a cure for the neurological condition.
Emma was diagnosed with Motor Neurone Disease in 2018 at the age of 37 and now relies on life support ventilation 24 hours a day. She decided to create a blog on Facebook, ‘Mummy with MND’, to share her experiences of living with the condition, building a following of over 27,000 people. It inspired her to campaign further for research funding into MND, and to create a further support network on social media for the MND community, ‘MND Warriors United’. Working closely with national charity ‘MND Association’ and with her local MP and Chair of the All-Party Parliamentary Group on Motor Neurone Disease, Andrew Lewer MBE, Emma has been at the forefront at two successful campaigns. The first, the ‘Scrap Six Months’ campaign, has led to the Department of Works and Pensions ensuring people with MND can access fast-tracked benefits without having to wait until a diagnosis of six months or less to live. The second, in November 2021, was a joint ‘United to End MND’ campaign alongside ‘Motor Neurone Disease Association’, which saw the Government announce it would fund £50 million over five years towards the establishment of a specific Motor Neurone Disease Research Institute to try to find a cure to the condition.
In a personal letter to Emma, Prime Minister Boris Johnson said:
“I am lost in admiration for the fortitude you have shown since your diagnosis, and for all that you have done to promote awareness of Motor Neurone Disease.
“You have been at the forefront of campaigns, including the recently announced £50 million government fund into research. This will transform the fight against MND and give new hope to anyone who has been diagnosed. Thank you also for your fantastic ‘Mummy with MND’ blog. Your story is an inspiration to many, especially your daughter, Veryn.”
Andrew Lewer MBE, MP for Northampton South and Chair of the All-Party Parliamentary Group on Motor Neurone Disease, said:
“I am thrilled that Emma has been recognised for a Prime Minister’s Point of Light Award. Emma received devastating news being diagnosed with Motor Neurone Disease, but has campaigned tirelessly alongside raising her family. Her dedication to this cause and the challenges she has overcome, is testament to her strength of character. I am very happy to present her with this award for all her hard work.”
Sally Light, Chief Executive of the Motor Neurone Disease Association, said:
“I’m so delighted that Emma has been given this award. As part of the campaign to secure a new £50m Government investment in targeted MND research, Emma shared her experience of MND and how the disease has affected her and her family. Through her blog and her campaigning work she has highlighted why we need this investment to find effective treatments and ultimately a cure for MND. We’re grateful to Emma and everyone living with MND who supports us in raising awareness of MND through campaigning and sharing their story.”
“It’s an honour to be recognised as a Point of Light for my work within the MND Community. Motor Neurone Disease is a devastating terminal illness and when I was diagnosed at 37, I was horrified to learn that there was no treatment and no cure. I’ve been very lucky to work with an incredible team of patients and charities in order to secure a much needed £50 million pound investment for targeted MND research. I accept this award on behalf of everyone who is living with MND and thank them for their strength, bravery and determination.
“With huge thanks to my family, particularly my darling daughter, who keeps me motivated and inspired. Together, we are united to end MND.”