Dylan Grogan will sky dive to support his mum and FMA UK. Dylan told us: ‘’I have decided to sky dive to raise money for Fibromyalgia Action UK as my mom Jacqui Grogan has fibromyalgia. I also want people to understand what this condition is as many don’t understand what fibromyalgia is.
On the 22nd of April 2018 I will be doing a 15,000ft skydive for Fibromyalgia Action UK.
My mom has fibromyalgia for many years and she also suffers with depression. It is so hard to understand fibromyalgia and we as a family found it hard to deal with it, but after reading a lot about fibromyalgia I’m starting to understand what she is going through and I know all I can do is support her but I also wanted to do the skydive to help and to support everyone else who suffers with fibromyalgia’’.
To donate visit Dylan’s JustGiving page:
Please note that the Benefits Helpline will be closed on Monday 22nd and Friday 26th January 2018.
Paul Truswell, a veteran fundraiser, will walk 900 miles across the whole length of the UK to raise £10,000 for FMA UK. The walk will take place from the 1st April 2018 and it will start from the English Channel at Dover to Cape Wrath, the far north-west corner of the island of Great Britain. FMA UK is very grateful to Paul for planning this amazing challenge of his lifetime and keeps fingers crossed for the success of the journey; we hope that our supporters will join us in supporting Paul in his incredible fundraising challenge.
To donate visit Paul’s fundraising Page:
To learn more visit Paul’s trek’s website: http://www.truswell.org/trussytrek2018/
Paul told us: ‘’TrussyTrek 2016 saw me successfully navigate 560 miles on foot from Lowestoft to Land's End raising over £3000 for my local Scout group in Macclesfield (1st Hurdsfield) and in 2014 300 miles from Lindisfarne to Iona raising £2500 for Cre8 Macclesfield. 2018 turns my attention to the challenge of walking from the English Channel at Dover to Cape Wrath, the far north-west corner of the island of Great Britain, supporting national charity Fibromyalgia Action UK with the target of raising £10,000 to support their work. The beeline direction of the route is approximately towards magnetic north; hence the title given to the journey.
Research opportunity: Families with Fibromyalgia
Researcher: Catriona Galbraith, University of Stirling
This study is looking at: (i) the support available to you and your family; (ii) experience of relationships; and (iii) places you find supportive/unsupportive while living with fibromyalgia, or supporting a family member with fibromyalgia.
To take part, you must have been/or know a family member who has been diagnosed with fibromyalgia, and have other family members willing to take part who are aged 10 or older. The research involves an interview where you would be able to map out relationships and places that are supportive and unsupportive, then provide a written account on one good and one bad memory of support, and then have another interview about the written account. Unfortunately due to limited funds, the researcher is unable to reimburse participants. However, she does not expect participants to travel and she will aim to travel to them.
If you would like any more information or would like to take part in this research, please contact Catriona Galbraith by telephone: 07746 262967 or by email: email@example.com
John Speirs is running a series of marathons and runs to support FMA UK work and to raise awareness of fibromyalgia because his wife, Lynn, lives with fibromyalgia. We have already written about John’s challenges and here is an update from John after he has run a few more runs. John: ‘’ The Strathclyde Park Half Marathon event went really well.... I finished 4th! I completed in 99 minutes on a very slippery and cold course and set a personal record of 5k of 19.39 minutes also I’m chuffed!’’.
John has also run the Cumbernauld Santa run 5k. In January he will start a proper marathon training for Edinburgh Marathon taking place in May 2018.
John told us: ‘’So I’ve decided to run a marathon at the grand old age of 42. Why? Very simple, to help raise awareness of Fibromyalgia and hopefully raise some much needed money. My wife Lynn was diagnosed with Fibromyalgia about 6 years ago. Since then she has got progressively worse and she is now in constant pain.
Chris Murray is doing a series of tough mudders challenges for his Mum. Chris told us: ''My name is Chris, I am 29 and currently live in Halifax, West Yorkshire and I’ve decided to run 19 Tough Mudder events over a space of 5 months, some with back to back days and with only 5 days recovery time between events. Why? Because back in 2004, at the age of 16, whilst going through my GCSE’s, living at home with a brilliantly loving mother who raised three children single handed whilst working a full time job, she became sick.
My mum, Jackie, was forever active, when she was back from work she was playing with my little brother, at weekends a lot of her time was spent in the garden, out shopping or doing some form of DIY in the house, but that all changed. She became lethargic, was feeling pain when moving and was struggling to walk down the road on her bad days. Naturally, she went to the doctors for a check-up, they ran many tests, and couldn’t find a physical or biological reason for the deterioration she was going through, one doctor suggested that it was a psychological condition. As time passed she deteriorated and had to leave a job that she loved, but it was a hard task to help get my brother ready for school, let alone travel by bus to work.
Cheryl Crook run a 5K run while living with fibromyalgia - many congratulations from us to Cheryl! Here is Cheryl's' inspirational story: ''Hi my name is Cheryl. I was diagnosed with Fibromyalgia & Chronic fatigue over 10 years ago but I am sure I have had this since my 20's. I am now 52.
Last year my best friend Nikki asked me if I would do a 5k Run with her. She said I could walk it if I wanted. I said ok, but I will run with you too. I am lazy when it come to exercise so I didn't start proper training till June this year on a treadmill then eventually running outside. I began to amaze myself starting at 1k then making it to 5k. I was so proud of myself. Some days me and Nikki would meet up to get the feel of running together had a few laughs on the way and encourage one another as she is like a sister to me.
Young people’s perspectives on the impact of their fibromyalgia on education and wellbeing – Research help needed
Young people age 16-25 with fibromyalgia are needed to help with PhD research at the University of Cambridge. This research looks at the impact that long term conditions have on education and wellbeing. If you can spare 15 minutes to complete an anonymous, online survey about education and support networks, it would be extremely helpful. For more information about the study, the researcher, or to take part, please follow the link http://cambridge.eu.qualtrics.com/jfe/form/SV_3pJ3SYh7ffgKUMB
A team of individuals from the University of Dundee, including people with fibromyalgia, have designed a comic with the purpose of raising awareness of fibromyalgia amongst professionals, families, and other communities. It illustrates the ongoing life transitions of those who have fibromyalgia, as well as its impact on friends and family. It also highlights the importance of a strong support network to enable people to adapt to the multiple transitions triggered by fibromyalgia and flourish despite its substantial challenging consequences. Please click here to have a read!
Report on Trustees Weekend meeting 28/29 Oct 2017
The trustees and regional coordinators got together on the weekend of the 28th October in the Head Office site in Paisley. This meeting was to allow the board to discuss the strategy and business of the charity for the coming year. It’s also an important opportunity to meet with the regional coordinators and discuss how the charity can best help support groups and grow the charity.
These meetings as well as allowing the business of the charity to be discussed, allow the board and RC’s to meet socially and for new members of the charity to put names to faces and get to know one another. By appreciating the skills of each other we know who to call when the need arises later on.
Top to Bottom from Left to Right. Trustee(T), Regional Coordinator(R), Office(O), and Volunteer(V)
Pam Cantrell (R), Joyce Fox(R), Hazel Borland(O), Yvonne Singleton(R), Julie Powell(R), Ella Vine(O), Mo O’Donnell(O), Glen McGregor(T), and Simon Stones(T)
Janet Horton(T), Louise Dickson(V), Des Quinn(T) (& Chief), and Helen Watts(T)
John Speirs is running a series of marathons and runs to support FMA UK work and to raise awareness of fibromyalgia because his wife, Lynn, lives with fibromyalgia. John told us: ‘’So I’ve decided to run a marathon at the grand old age of 42. Why? Very simple, to help raise awareness of Fibromyalgia and hopefully raise some much needed money. My wife Lynn was diagnosed with Fibromyalgia about 6 years ago. Since then she has got progressively worse and she is now in constant pain.
5 years ago after the birth of our daughter my wife was really struggling with pain and eventually had to stop working. Every day is a challenge for her and its made all the more difficult as I am in the RAF therefore live 200 miles away on weekdays. Not to mention being deployed overseas frequently for months at a time (8 in the last 23). Nobody can see my wife’s illness, its invisible. Unfortunately the NHS answer to her illness is anti depressants, sleeping tablets and codeine based (addictive) painkillers. These are not an option for someone looking after a child therefore they were rejected!
She was referred to physio.......the response from the physio was that they couldn’t do anything for her. We spent money that we could ill afford on a private specialist in the hope of some progress....again nothing. It seems that nobody actually knows how to treat a Fibromyalgia sufferer.
Faye who is a fire fighter from Aintree, Merseyside, is doing a number of fundraising challenges to raise vital funds for Fibromyalgia Action UK, because her mum lives with fibromyalgia. She is also raising money for The Fire Fighters Charity. Faye, who has been taking part in a number of fundraising activities over the course of a year, used the treadmill challenge as a training exercise before she takes part in the New York Marathon on Sunday, November 5 to raise even more funds for Fibromyalgia Action UK and the Fire Fighters Charity.
Faye told us: “I’m hoping as many people as possible will continue to support me and raise awareness of Fibromyalgia Action UK and The Fire Fighters Charity whilst helping me raise as much money as possible for two wonderful causes by donating money, visiting my justgiving pages or textgiving. My dream is to raise around £2,000 for the two charities as both are close to my heart and provide valuable services to people all across the UK.’’
To sponsor Faye https://www.justgiving.com/fundraising/faye-disley-1