Wife, mum, christian, musician, songwriter, former school teacher, FND advocate, fundraiser and volunteer for FND Hope UK. All views expressed are my own.
Dorset, England
Joined August 2016
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Hi all. I have made the decision to limit my use of social media. Therefore I won’t be using Twitter anymore. Thank you to you all for your support and I wish you all the very best in life. xxxx
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Things are changing for those of us with #FND but it’s slow. I’m thankful that I was able to go to Parliament with @FNDHopeUK to speak with politicians who can help bring about real change. I may not feel that well, but I do feel encouraged by my experience. Never give up hope.
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…the physio I had during my rehab @WolfsonNeuro as a follow up. I have never had such positive care and treatment from local services. The last time I ended up at A&E at this particular hospital I was told to go home, take paracetamol, forget about it & it would be fine!
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I have been referred to see a local neurologist & have another scan to triple check all is ok. I have already had 2 visits from community neuro SALT to help with my swallowing. They are also going to contact the neuro physio that I have seen following a referral made from…
3
…of fluids due to my catheter & #chronickidneydisease #CKD and the hot weather. Also had to change how I take my meds as I can’t swallow tablets! All good fun!
Still have muscle weakness, loss of sensation, numbness, pins & needles, extreme fatigue.
#swallowing #dysphagia
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Level 4 diet is more difficult at home. I am not really hungry. I can’t do much physically so totally reliant on family to provide thick custard, thick yoghurt, thick soup, puréed veg, creamed potato, Ready Brek etc.I need to make sure I get the right nutrients & need plenty…
Our postponed 18.4 mile Move-a-thon from Sandbanks - Hengistbury Head & back for @FNDHopeUK (you can’t push a wheelchair through a prom covered in sand!) will now be on Sunday 28th May.
If you would like to sponsor us, follow the link below. Thanks👩🏻🦽😀
fndhopeuk.enthuse.com/pf/ali…
Do you live in Poole and have your own Craft Business? We would love to support you while also raising some money for a new church building. See details in the picture. Thank you.
#craft #SmallBusiness #supportsmallbusiness #craftfayre #fundraising #crafting #fun #cake
Here is a short snippet of a clip of me singing at FuNDfest!
youtu.be/J7hxzOeo5t8
#fnd #FND #fndaware #fndawarenessmonth #fnd2023 #letstalkfnd #fndhopeuk #charity #fundraising #awareness #event #music #livemusic #singer #singersongwriter #musician #wheelchair #change #hope
Thank you to everybody that supported FuNDfest. We rounded the money up slightly so that the total raised is £900.00 for @FNDHopeUK I am absolutely thrilled!
#FND #fndaware #letstalkfnd #fndawarenessmonth #fnd2023 #charity #fundraising #hope #change #bethechange #thankful
Ali Newland (she/her) 💙🧡 retweeted
FND Hope is the first and only global charity for people with #FND. Launching in 2012, the charity now serves members in over 90 countries, collaborates on intl research, and has the most comprehensive FND Provider Directory. Find out more at fndhope.org/about-fnd-hope/
Ali Newland (she/her) 💙🧡 retweeted
Charity appeal -
I am running the #LondonMarathon 2023 to support the @FNDHopeUK
The #FND community in the UK needs your support. I request you all to donate and support. Together we can be #FNDaware and #beatFND
Please donate via the following link
2023tcslondonmarathon.enthus…
I was interviewed on BBC Radio Solent on Saturday. If you would like to listen use the link below and go to about 2 hours 18 mins.
#FND #fndaware #fnd2023 #fndhopeuk #charity #fundraising #fndawareness #livemusic #Radio #interview #sponsor #volunteer
bbc.co.uk/sounds/play/p0fclx…
…and more photos from FuNDfest in aid of @FNDHopeUK
#fnd #FND #fndaware #letstalkfnd #fndawarenessmonth #fnd2023 #charity #fundraising #fun #laughter #volunteer #community #photoprops #photofun #music #colouringcompetition #fun #laughter #fndhope #music #livemusic #bethechange
Some more photos from FuNDfest in aid of @FNDHopeUK
#fnd #FND #fndaware #fndawareness #fnd2023 #brain #nervoussystem #charity #fundraising #music #livemusic #cafe #competitions #fun #laughter #change #bethechange #volunteer #disability #ability #donations #thankful #community
We had an amazing day at FuNDfest yesterday.
Thank you to all the amazing musicians, prize donors, refreshment donors & my wonderful army of volunteers. I will let you know how much we raised once we have done the maths!
#FND #fndaware #letstalkfnd #fnd2023 #fndhopeuk
