On the 15th of December our community came together to experience the true ‘spirit’ of Christmas at our annual concert ‘Carols by Candlelight – An Evening of Christmas Spirit’, where we looked toward the future and celebrated what has been a busy and eventful year for us and the Move4Parkinson’s family as a whole.
This time of the year allows us to reflect back on our journey and express gratitude for all of the good in our lives. I wanted to take this opportunity to offer my own gratitude and recognise the boundless enthusiasm, dedication and commitment of our volunteers and team members.
For those of you who aren’t familiar with Parkinson’s or what we in Move4Parkinson’s do, I wanted to take just a brief moment to explain. Parkinson’s is a progressive condition that affects the brain. There is no known cure. We estimate there are 12,000 people with Parkinson’s in Ireland, when we take into account family members, the numbers impacted rise to 72,000 or almost the population of Galway City.
Many of us think of Parkinson’s as an older person’s illness, I certainly didn’t expect to be diagnosed 10 years ago at 47. We also tend to think of it as simply resulting in a tremor, but there is a lot more to it than that. Here in Ireland people with Parkinson’s have been unseen and under served for too long, we are determined to change that and to do it in a positive way, we are determined to bring back hope, bring back joy, bring back real well-being to the thousands affected by Parkinson’s across Ireland.
We want to create a world that understands Parkinson’s, we are dedicated to educating, empowering and inspiring People with Parkinson’s. We are a voluntary organisation that, although fairly young, is committed to developing and expanding so as to better the lives of people with Parkinson’s and their families all across Ireland.
As a charity operating in what is still a very challenging economic climate it is important that as CEO I take a moment to address the issue concerning charity funding and expenditure that has been widely reported in the media. An extremely serious issue that has understandably led to the general public questioning the use of donation funds, it has affected the sector and not just any one organisation. In fact, it is estimated that there has been a 40% drop in donations at what is one of the most vital fundraising periods for any charity.
While what has happened has angered many, I want to urge all of you to continue supporting the charitable sector. Ask for clarity, but please don’t stop giving. At Move4Parkinson’s we are committed to transparency and engaging in an open way with Government, stakeholders and broader communities, and as such, our financial accounts are available online.
I believe that we can utterly transform what it means to live with Parkinson’s in Ireland today, but to do that we need help, from government, industry and society as a whole. We all have to work together.
2013 has been a momentous year for the charity, surpassing all expectations with just one full time team member and additional support for 6 months. It excites me when I see what we have achieved with such talented but limited resources, and think about the potential if we had 2, 3 or even 10 full time team members. With this in mind, I would again ask you to continue to support us and the sector; we want the opportunity to show you what we can achieve with your backing. Furthermore, keep in mind too that support doesn’t always have to be monetary and volunteering your time is also a huge support to charities. We want to hear from you all!
So thank you to our team, to our volunteers who give so much, often behind the scenes, whether it is strategic planning or on the ground day to day support that enables us to work with People with Parkinson’s all over Ireland. Most of our volunteers have full-time jobs and we simply wouldn’t be able to do what we do without them. The trip to Montreal to participate in the World Parkinson’s Congress being a perfect example, where 22 of our members represented Ireland on a global stage or our Christmas concert which has attracted 400 people. Every one of our volunteers provides us with invaluable service and support, and I thank you.
I do also want to take a moment to thank all of our amazing sponsors who you will see in the below slide show. They have given us not just funding and voluntary hours but also friendship and support in what we are doing.
Thank you to all of you, sponsors, volunteers, team members, participants, supporters, for your passion for what we are doing. Thank you for believing in Move4Parkinson’s, a charity that was started on a living room couch, with a logo that was designed at a kitchen table and which began with a simple but overwhelming belief that surely there was a better way to do this. A belief that it is possible to live well with Parkinson’s, that there is hope, that we absolutely can still have joy and fun and laughter in our lives.
Thank you to all of you who have helped us to begin to realise that vision, we still have a huge amount to do, we still need all the support we can get, but we have started at least and I hope you enjoy us sharing with you the amazing experiences we have had over the past year.
Finally I want to thank our choir, a group of people with Parkinson’s, their family and friends. One of the symptoms of Parkinson’s disease is that your physical voice is affected and singing is one of the ways to improve that symptom. As Jennifer our musical director is a speech therapist we have a winning combination.
The symptoms of Parkinson’s are so unpredictable that we lose confidence and tend to stay at home and become isolated. The choir is a place where we can come and be with a community that understands. This disease has a huge impact on the individuals affected, but let’s not forget about the unsung heroes our incredible families who have to watch us and adjust their lives in so many ways, without them we could not have the quality of life that we have today.
So when you watch us sing look past our slowness, look past our tremor and really see us, as people, see the power of music and community and friendship in getting a message of hope and positivity out to the greater Parkinson’s community and to the world.
And so, I am delighted now to share the story of our last year with you. A Glor Gospel is our musical director jen’s other choir, they have been an incredible support to us over the last 18 months. So we thought it fitting that as we show you what we have done over the last year that they would sing about it. From all of us in Move4Parkinson’s a huge thank you to all those of you who have supported and championed us throughout this year, we are eternally grateful to you. We wish each one of you a truly joyful Christmas and a wonderful new year. We look forward to more exciting adventures, to defying expectations and to realising our vision of ensuring all of us can live well with Parkinson’s in 2014.
About the Author:
Mags MullarneyFounder of Move4Parkinson’s, Mags was diagnosed with Parkinson’s in 2004 when she was 47 years old. Since then she has worked tirelessly to better understand Parkinson’s and to improve her quality of life through taking a multi-disciplinary approach and utilising complementary medicine in addition to the traditional. She spends much of her time speaking to groups and individuals about her journey so far and the ways that PWP’s can empower themselves to better manage their Parkinson’s.