My own personal experience of losing my partner to MND was the driving force in joining the branch and becoming involved in any way possible. After 9 years, I am still here as Secretary, Branch Contact, Association Visitor and MND Connect helpline volunteer. I was also thrilled to be voted in as one of the Trustees of the National Association in September 2009 which means that I am able to be even more involved in decision making that should have a positive impact on people and their families living with Motor Neurone Disease.
In 1982 my father died of MND and at the time I was a District Nurse. I felt that that as a nurse and after spending years of training I should have been able to do something to stop the disease. Following my father's death my mother Stella Edwards had been approached by the MND Association to set up a local branch in Merseyside. I then joined my mother and we started the Merseyside Branch in 1983. Since helping my mum setup the branch I now feel my that nursing skills plus knowlege of MND can help alot.
|Secretary (shared role)|
I joined the branch and then the Committee in 1991, following my Mum Maureen being diagnosed with MND. She died 18 months later. I remain involved, to help the fight to find a cure for this devastating disease, and to do something to help support people diagnosed with MND, and their families.
My brother was diagnosed with MND when he was 36, he died in 2007 aged 38.
Until I was confronted with the reality of the disease I knew very little about it - now I feel motivated to raise awareness and increase the profile of Motor Neurone Disease when I can. Being part of the Merseyside Branch allows me to do that with the support of other positive people who are affected by the disease. We are all working towards the same goal, we welcome people warmly to our meetings and will always help where we can.
|Peter Marrs||I became involved when my brother Tommy was diagnosed with MND 23 years ago, since then I have been a volunteer and committee member and am involved in all areas of the Branch. Our annual Race night has been running for 20 years and every Summer we offer a trip to Blackpool for families.
|Campaigning and Awareness|
My husband, John, died in November 2010 from (Bulbar) MND and I gave up work to spend time with him and be responsible for his care. He had the added complication of frontotemporal dementia which meant that many of the professionals involved in his care lacked understanding of the condition. This resulted in my having to work even harder to ensure all his needs were met. My experience of MND made me re-assess my priorities and rather than return to my previous life in industry I am in the fortunate position of being able to offer my services to the MND Association.
In November 2012 I completed the Inca Trail in Peru to raise funds and awareness of MND. I am the Campaign and Awareness Raising contact for the Merseyside branch, also a trustee, I serve on the Care Committee and am Chair of the Engagement Committee.
In March 2014 I will begin a two year project with the National Institute of Clinical Excellence (NICE) to develop a clinical guideline on the assessment and management of motor neurone disease.
I do what I do because living with MND you got no choice but to live life to the maximum. That is why I enjoy my collecting and meeting people.
|Sheila Morley||tel: 0151 924 0583|
I lost my Brother in Law to MND in July 2003. Since then, I have always been very active in fundraising for the MND Association. It seems so wrong that you need a loved one to be diagnosed with MND before you have the awareness of the disease, so my personal priorities are to do all I can to promote awareness and raise as much money as possible to assist with research and care. I have been so impressed by the enthusiasm and commitment of the Merseyside branch that I wanted to do more to help at a local level and so I volunteered to join the committee as corporate fundraiser.
The Merseyside branch is interested in hearing from anyone who would like to help out or join our committee. We are also looking for Association Visitors in the area and would be delighted to hear from anyone who might be interested in finding out more about this role. Please contact for information and further details of how you can get involved locally.
For more information on volunteering opportunities with the association, please visit the National Office website at www.mndassociation.org.