December 2017

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December News Letter

FND Hope UK announces a new Trustee to the board

FND Hope UK is delighted to announce the appointment of a new trustee, to join its UK Board of Trustees – Louyse McConnell-Trevillion.

Louyse lives in Scotland with her family and brings with her a wealth of knowledge and expertise in Data Protection and Freedom of Information, in which she has set up a consultancy business alongside her husband to provide advice. Louyse worked as a Solicitor for the Scottish Government providing advice to Lord Advocate and Solicitor General in their responsibilities under the Scottish Act 1998 and other non-criminal matters. Louyse has also worked on Acts of the Scottish Parliament, introducing bills and drafting secondary legislation.

In response to her appointment, Louyse said “I feel very honoured to be a member of FND Hope UK and will work with all my energy and passion into achieving greater awareness, training and health care for those with FND and their families”.

 

Louyse runs the 10K Charity Christmas Festival and raises £130.00 for FND Hope UK

Louyse successfully ran the 10km Charity Christmas Festival on 3 rd December 2017 to raise money for
FND Hope UK. Louyse came 6th in her age category, with the first woman in her category only 1
minute and 27 seconds in front. What an amazing achievement.

Louyse wanted to raise money for FND Hope UK due to being diagnosed with FND about 5 years ago
and feeling the great impact it had on her quality of life and that of her family. She was (and is determined to see herself as) a long-distance road runner having completed many 10kms, half marathons and 1 charity marathon. Her most debilitating symptom is daily pro-longed whole body seizures which prevented her from running for a long time and made it impossible for her to run free in the fresh air. She started training recently again on a treadmill in the local gym as she can find no running club that can accommodate her. She is positive though – she says at least it always makes her the fastest runner in the club! And now she has added the first silver ware.

FND Hope UK would like to congratulate Louyse on an amazing run and raising £130 so far. We’d like
to say thank you so much for advocating for FND Hope UK.


November 2017

Be part of #GivingTuesday on 28th November

#GivingTuesday arrived in the UK in 2014 and its a time to support local charities, which is why we have partnered up with the Charities Aid Foundation.  Our theme is #Penniesforhope.  We want you to donate all your old pennies to us and aim to raise £20.17 to celebrate the year 2017. 

We have two ways you can support our charity either through Just Giving 

Or Text GITU01 £1 to 70070 to donate to FND Hope UK and make a difference today. 

Thank you for making a difference

October 2017

Work & Pensions committee launch enquiry on ESA/PIP

The work & pensions committee are launching an enquiry on how the ESA/PIP Assessments process are handled by the Department for Work and Pensions contractors, ATOS, Capita and Maximus, and how the application, assessment and appeals process  for the above benefits are working.

You have the option to write a submission based on questions the Work & Pensions committee have raised.  Submissions need to be completed by 10th November.  You can find more information on the this link.

 

 

OCVA helps raise awareness of Functional Neurological Disorder in The Oxford Times

Gillian Warson from the Oxfordshire Community Voluntary Action (OCVA), interviewed Dawn Golder to understand how the OCVA helped to establish FND Hope UK as a Registered Charitable Incorporated Organisation and the importance of raising awareness of Functional Neurological Disorder.  Gillian was able to write the news article as part of their letter page, which was published in The Oxford Times on Thursday 5th October 2017.

Click on the link for more information: New group aiming to raise awareness of neuro disorder

 

Simon Taylor runs the 1/2 Red Car Marathon and raises £148.00

I decided to do the race to raise both money and awareness for FND Hope, as my wife Natalie has been diagnosed with FND for the past twelve years. Like most people, I knew nothing about functional neurological disorders until I met Natalie. I work full time in the fitness industry as a trainer and a coach, but I only started training specifically in July. Whilst I do a lot of exercise and cardio in my classes, it had been a while since I had done much outdoor running and five years since my last half marathon. I decided to do one long and one short run a week in addition to my regular exercise, starting off small and adding a few minutes each week to both. For my last two weeks, I tapered my training, after covering the race distance the previous week. With light runs in the build-up, I was ready for race day.  It was a relief to complete the race after second-guessing myself around the middle, not knowing if I’d prepared enough or if my pace was right. Natalie and her mother and sister all came along with my parents to cheer me on near the finish line. I finished in just under 90 minutes, but the best thing was how proud my wife was of me. It meant so much to her that I would do this for her, but to me, it was just a small contribution to help those who fight FND every day. No matter how much Natalie describes her symptoms, I still can’t grasp what it must be like to suffer intense physical pain every day and keep smiling. Because I wasn’t in Natalie’s life at the time of her diagnosis, I get frustrated on her behalf that specialists still seem to know so little and help comes so slowly. I tend to forget that so much progress has been made, with patients no longer misdiagnosed endlessly and FND no longer having a ‘fake illness’ label.
Whilst I’m grateful for all the help Natalie is getting, I still hope more can be done so she isn’t always in as much as she is now.

On behalf of FND Hope UK, thank you so much for raising awareness and raising a fantastic amount for our charity.


September 2017

FND Hope UK Enters Just Giving Christmas Campaign #jgchristmas

We have entered our FND Hope UK Campaign to raise awareness of our Mission and also to be in the chance of winning £2000.00 – Wish us luck!! Winners to be announced 15th December 2017 #jgchristmas

FND Hope UK Campaign

Press Release to raise Awareness

Let’s start raising awareness of FND and send our Press Release to your local Newspapers, Media Outlets, magazines etc.  

Press Release

 

FND Hope UK creates MP Letter

The following FND advocacy letter has been provided for those who would like to reach out to their MPs. You may also email a copy to your GP requesting they too complete and submit the letter. This document provides editable fields.*

Please click here for further information

 

FND Hope UK talks NICE

FND Hope UK is committed to advocating for better standardised care for those battling Functional Neurological Disorder. Current NICE recommendations suggested patients with functional illness were not always referred to neurological services. This was just one of the many reasons FND Hope UK was eager to submit comments when NICE welcomed input from stakeholders for Suspected neurological conditions: Draft guidance consultation. FND Hope UK would like to thank Dr Jon Stone, Dr Tim Nicholson, Amy Bradley, Dawn Golder, Bridget Mildon and Matt Birtwistle for their contribution to the submitted comments. 

For more information  click here

 

Government Petition

FND Hope UK creates a Government Petition to: Improve Availability of NHS Services for FND Sufferers.  We have 6 months to obtain 100,000 signatures for this petition to be debated in parliament.  Once signed, please send the petition to your family & friends via Facebook / Twitter.

Click the link to sign the petition and share.

 

Dawn Golder’s FND story is published in The Mighty

Dawn says ‘It is important for me to share my story, as I want to help other’s understand they are not on their own. We are all in this together.  My story is How the Stigma around Functional Neurological Disorder affects me’- https://themighty.com/2017/09/functional-neurological-disorder-stigma/

Dawn would like to thank Michelle Tuttle in allowing her to use one of her images – MCT Photography

 

FND Hope UK attends 3rd International FND conference in Edinburgh

3 days, 32 presentations, 500 delegates over 5 continents attended the 3rd International FND conference. Dawn Golder, Bridget Mildon, Amy Bradley, Marieke van de Ree and Kate Gill, represented FND Hope UK, FND Hope US, FND Hope AUS and FND Hope Netherlands, talking about the Scientific Registry, Medical Directory and presenting Leaflets designed to be handed to FND patients for support.  The FND Hope team are currently working on creating an output of the sessions… watch this space!!

 

Nick Townsend completes a 24 hour Live Stream Event and raised £268.05

Hi my name is Nick Townsend, those in the gaming community know me as Sgt-Rico88 and I’m a broadcaster on Twitch.  I wanted to help raise awareness for FND Hope UK as my partner’s father was diagnosed with FND a few years ago.  I wasn’t with my partner at the time but I heard just how hard it was when his world fell apart and how crucial a part FND Hope UK played in terms of support in those early years.  So I couldn’t think of a better cause to try to raise some money for.  I thought to myself what can I do that anyone could do, that was also extraordinary, I was talking to some friends online and they suggested a 24 hours stream to raise funds and awareness and I thought it was a great way to do it.    the support from FND Hope UK was great with plenty of information given to me and extra help advertising my event.  It was great fun and can’t wait for my next challenge.

Nick, on behalf of FND Hope UK thank you so much for your help and support, we can’t wait to see what your next challenge will be.


August 2017

Dawn Golder organised a Pub Quiz and Raffle to raise awareness of FND and raised £200.00

On Thursday 31st August, Dawn Golder and Christina Golder organised a Pub Quiz at their local – The Musketeer to raise awareness of Functional Neurological Disorder and to raise much needed funds for educational material.

Dawn said ‘As an FND sufferer, it is really important that everyone understands FND, as it is a complex disorder and confuses many people. I would like to pass on my thanks to Sean at The Musketeer, who has kindly agreed to resume the monthly pub quiz in aid of FND Hope UK’.  The next Pub Quiz is being held on Thursday 21st September.

On behalf of FND Hope UK, thank you so much

 

New Research from Massachusetts General Hospital

Imaging study identifies brain structural changes linked to physical, mental health in FND patients

An imaging study by Massachusetts General Hospital (MGH) investigators has identified differences in key brain structures of individuals whose physical or mental health has been most seriously impaired by a common but poorly understood condition called functional neurological disorder (FND). In their report published online in the Journal of Neurology, Neurosurgery and Psychiatry, the research team describes reductions in the size of a portion of the insula in FND patients with the most severe physical symptoms and relative volume increases in the amygdala among those most affected by mental health symptoms… Read more: http://www.massgeneral.org/about/pressrelease.aspx?id=2140

 

FND Hope UK asked to participate in NEAD research:

Name of Research: Self Perceptions and Seizures

Name of Researcher: Sr Markus Reuber / Stephanie Clegg (Trainee Clinical Psychologist University of Sheffield)

What is the study about: 

A research study to assess how different self-perceptions are related to how people with seizure disorders cope with their seizures. We are also interested in how these self-perceptions are associated with other aspects of people’s lives, for example their mood and well-being.

Link to Study – https://sheffieldpsychology.eu.qualtrics.com/jfe/form/SV_cx2kncsejjiLaux

 

FND Hope UK asked to participate in NEAD research

Name of Research: Psychological Mechanisms in Non-Epileptic Attack Disorder

Researcher: Tasha Cullingham – Trainee Clinical Psychologist University of Lancaster

What the study is about:

The purpose of this study is to gain a better understanding of the psychological mechanisms involved in physical sensations that individuals with a diagnosis of NEAD feel.  We are hoping that this will help us learn more about the psychological factors which contribute to experiencing a non-epileptic attack, so that in the future we can explore what types of psychological support will best help individuals with a diagnosis of NEAD.

Link to Studyhttps://lancasteruni.eu.qualtrics.com/SE/?SID=SV_884sLVjsMhEdVA1&Q_JFE=0


July 2017

FND Hope UK become members of the following:

OCVAOxfordshire Community Voluntary Action – They provide support and empower volunteers, networks, partnerships and not for profit organisations big and small

NCVO National Championing Voluntary Action – Champions the voluntary sector and volunteering.

Small Charities Coalition – Helps small charities access skills, tools and information they need to get going and do what’s best

the neurological alliance – collective voice for 80 organisations working together to make life better for millions of people in England with a neurological disorder


June 2017

FND Hope UK becomes a registered charity

FND Hope UK becomes a registered charity #1173607 to raise awareness and understanding of FND, coordinate an FND voluntary patient’s register to assist doctors in the advancement of new & ongoing research in partnership with the Genetic Alliance. Work with Medical and Allied Health Professionals to provide a better understanding of FND, improve medical protocols & promote ethical standards.