Andrew and Sandra Spriggs were invited guests at a reception which heard from author Dr Jane Hawking.
The first wife of Professor Stephen Hawking, Jane wrote the book behind the Oscar-winning film The Theory of Everything and remains an ardent campaigner for people affected by motor neurone disease (MND).
She told those present that she hoped the the film had drawn attention to the silent, often isolated despair of many patients and their carers.
More than 100 MND Association volunteers from England, Wales and Northern Ireland met with some 55 MPs and Peers at the VIP reception at Church House, Dean’s Yard on Tuesday October 18.
Andrew from the West Sussex North Branch said: “It was great to be at the reception and to speak with Jeremy Quin MP and other MPs about the importance of support for those living with MND.
We also met Paula and Robert McGuire, the couple who kicked off The Ice Bucket Challenge in the UK which ended up raising £7 million.
Sally Light, Chief Executive of the MND Association, said: “It was wonderful to see so many of our amazing volunteers gathered together and for them to have the opportunity to share their personal experience of MND with MPs and Peers present. It is a devastating disease and people affected need to have the support and awareness of decision makers at Westminster. In particular the day was an opportunity to talk about the importance of Attendance Allowance [a disability benefit for people over 65] and why it should be retained in its current form.
“We also talked to MPs about the Government’s recent announcement to scrap re-assessments for Employment and Support Allowance [ESA - a benefit for those unable to work due to a disability or health conditions] for those with severe, life-time conditions. We hope that people with MND will be exempt from these highly inappropriate re-assessments. The financial impact of MND and the extra costs of living with a disability can be immense for families so it is vital that people with MND have access to the disability benefits they are entitled to.”
Contributed by West Sussex North Branch of the MND Association
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