Brave Torbay teen says her incurable neurological disorder NEAD ‘is not fake’ as she busts myths
FND Hope UK Survey
FND Hope UK have created a short survey to understand what support you need or needed at the time you were diagnosed with FND. It also includes questions on what we are doing well, and what we could improve. This will help us towards understanding your needs in more detail and how we can improve our services to you.
Thank you for taking the time to complete our survey, and once we understand the support you need, we will share the results with you.
**ANNOUNCEMENT** IMPORTANT ** COVID-19
FND Hope UK have been monitoring the COVID-19 Pandemic very closely and following an EGM last night, made the difficult decision to:
1) Cancel all FND Peer Support Groups scheduled in March and April. Those who registered to attend peer groups in March & April have been notified separately. Please note, that they may need to cancel additional Peer Support Groups at the last minute if they receive notice to do so by the NHS, World Health Organisation (WHO) and or the Government.
They do have a Virtual FND Peer Support Group scheduled for 23rd March @ 12.00pm to 13.00pm to help support you during this difficult time. You can register your interest here: https://www.eventbrite.co.uk/e/93927574905
2) Cancel their Parliament Event scheduled for the 29th April. They are currently looking into rescheduling this, but need to monitor the COVID-19 Pandemic to understand when it will be safe to do so.
FND Hope UK are so sorry that they have decided to cancel these events, your health and safety is very important to us. If you have any concerns regarding the coronavirus please do visit the NHS Website: https://111.nhs.uk/covid-19
FND Hope UK would like to thank you for your understanding during this very difficult time. They will keep you informed of their plans and when they are likely to reschedule, they hope that you will all understand their decision.
If you have any questions, or concerns, please do email contact@fndhope.uk and we will be happy to support you.
Many thanks
FND Hope UK Board
Alison Newland raises £1177.57 for FND Hope UK Awareness Day
Alison is 43, and happily married to Richard and they have 3 children; Emily 18, Sam 16 and Joe . Alison is a qualified Primary School Teacher and for the past few years has been the Music Specialist Teacher at a special school.
Alison’s Story
I was diagnosed with FND on 12th March 2018. My symptoms are facial dystonia of the right side of my face, involuntary jerks and twitches, muscle spasms, chronic migraines, Chronic constipation, dizziness, lower back pain, achy arms and legs, parasomnia, chronic fatigue and recently developed dystonia of the left hand. I was diagnosed after about a year of going backwards and forwards to the GP, several trips to A&E, MRIs with and without dye, CT scans, a lumbar puncture and nerve conduction tests. All physical tests had come back negative. My neurologist said that he thought I was suffering with stress (as my job is stressful) and that was causing my symptoms. He told me to get counselling through our local NHS, which I did. He seemed to think that this would make it all go away!
Eventually, he agreed to arrange for me to have EEG video telemetry tests as an inpatient over a period of five days. The tests clearly showed involuntary movements and confirmed my parasomnia. It also showed that I slept a lot of the time. This proved that those symptoms at least were real! It was then that he diagnosed FND but he didn’t tell me much about it or how it can be treated. I came away from the appointment feeling quite hopeless. Nobody I know had ever heard of it!
My family and I began to research it online which is when we discovered the FND Hope website. It was such a relief to read all the information about the condition, recognise my symptoms that were listed and learn the clinical names for them, and realise that there is treatment available and hope for control of the symptoms and, possibly, a full recovery. I cried with relief. It saddened me that specialists are few and research is limited. Therefore, I decided to try and raise some money to help. I began a fundraising page on Facebook, through the FND Hope UK Facebook page, explaining my diagnosis and the lack of specialists, treatment and research and shared it with all my friends. I set my goal at £100 as I didn’t expect to make much. HOWEVER, loads of my family, friends, colleagues and acquaintances started making donations. In the end my Facebook amount totalled £579!
In the meantime, I had noticed that the International FND awareness day 13th April was coming up so decided to do an event to raise awareness and a bit more money. I think it helped me to have something positive to think about. I decided to do a café style event with some craft activities and competitions. I thought that this would appeal to all ages. I got my lovely family on board as volunteers and the event took shape. I just prayed that I would be having a “good day” that day. Fortunately I was! We sold tea, coffee, hot chocolate and cold drinks, had a cake sale, a guess the weight of the cake competition, guess how many chocolate eggs are in the jar competition (won by my little nephew who was absolutely over the moon!), a raffle, a decorate a biscuit table and a general art and craft area. I also set up an FND information point with leaflets about FND, the brain and the nervous system. On the café tables I put some FND leaflets and brain teaser activities to link with the whole brain theme and to get people talking. It was a brilliant morning. Family, friends, colleagues, neighbours, and people that I hadn’t seen for years came along to support and I was completely overwhelmed by people’s love and support. The café made £598.57, but, more importantly I was able to talk to lots of people about the condition and many of them took leaflets away with them.
I intend to keep fundraising and raising awareness as much as I can. We will beat this!
Alison, on behalf of FND Hope UK thank you for raising such an amazing amount of money, you are AMAZING! We hope the cake was scrummy, it looked delicious.
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