Essiewessy
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Tomorrow is World Neurofibromatosis Awareness Day Every day we fight for those affected to be heard. Tomorrow we are asking for you to help us shout even louder Please retweet to help us to raise awareness of this very complicated condition. #NFawareness
In support of our friends in Ireland please sign the petition. Care for NF in general is simply not good enough and needs a vast overhaul. Ireland is not isolated in this. Everyone wherever they live should have access to good quality care and treatment. #NF1
On behalf of the members of the NF Association of Ireland, we are calling for medical care services in the Children's NF clinic at Tallaght Hospital to be vastly improved Please sign this petition and share to help save the Children's NF clinic in Tallaght chng.it/4kSFFZNvcF
The Princess Royal being comforted by the Countess of Wessex 🤍 📸: Aaron Chown
As the flag is lowered to half mast over Windsor Castle an incredible rainbow appears over the castle, for a few minutes and then just like that it was gone….
#Genetic condition #neurofibromatosis is said to be rare, but when spending time with some of the 100s of #NF families brought together by #ChildhoodTumourTrust I can't help wondering just how #rare it really is. 💜💙💚 #NF1 #teddybearspicnic #nfawarenessday #CTT #nf1awareness
Thank you to our patron @RakieAyola for organising a CTT picnic today. Rain what rain? We were sheltered under a beautiful tree eating cake, chatting and watching the children play. #cttpicnic #nfawareness #neurofibromatosistype1 pic.twitter.com/HSfvmSX4MZ
Happy #NFAwarenessDay. Here's Georgie explaining exactly what #NF1 is and how it affects her. Thanks Georgie. Fab video💜🙏🏾😃💙💚 #neurofibromatosis
Tomorrow is NF awareness day, Georgie made this video for @PinehurstP assembly which was shown today ahead of blue and green day tomorrow. Learn about Neurofibromatosis from an expert 💚💙 This is how Georgie understands her NF and how much @ChildhoodTT mean to Georgie 💙💚
Rainy walk after school today 🌧️ 13.41km done 28.785km left 💚💙 If anyone would like to read Georgie's story or donate to her challenge here is the link ♥️ Thank you to all those who have donated and shared Georgie's story so far ♥️ justgiving.com/fundraising/Ge…
RIP, one of the greats "Sir Sidney Poitier, first Black man to win an Oscar for best actor, dies aged 94" twitter.com/i/events/14794…
We are a long way to go to reach our goal and we can only get there with your help please consider donating the price of a cup of coffee to make the world of difference to Tina "I just want to be accepted" - Tina, aged 13 gofund.me/d3950995
Almost £500 raised in just 24 hours Thank you. Please help to get Tina the care she so desperately needs "I just want to be accepted" - Tina, aged 13 gofund.me/d3950995
Thank you, Matthew Rycroft CBE @MatthewRycroft1 and Selvin Brown @selvinbrownmbe for that thought-provoking session on ‘Compassionate Leadership: creating a culture of inclusivity & inspiring positive change! #BAMEiL
There are so many brilliant speakers joining us at the BAME into Leadership conference next Thursday! If you're still considering taking part, you can grab one of the last remaining tickets here: bmeintoleadership.co.uk/registration #BAMEiL @Laks_Mann @OsiThomas @Tia_Priest @MatthewRycroft1
Nope we are not resharing a post from last week. This is Justin's second marathon in 7-days. Not sure when he has time to sleep but we are in awe of all he does. Thank you #nfwarrior #ctt
2 marathons 7 days. I set the challenge to raise awareness of Childhood Tumour Trust Every Step, Every Stride, Every Breath dedicated to the #NFWarriors all over the world. Please support this amazing charity by donating... justgiving.com/fundraising/ju…
Overwhelmed by this bronze statue of celebrated Cardiff Headteacher #bettycampbell CBE which was unveiled today. Not only is it the first statue of a woman anywhere in Wales, but sculptor #EveSheherd has created a phenomenal work of art any city would be proud of.
#isitok that after winning a gold medal at #ParalympicsTokyo2020 @thomasyoungt38 is a hero to my #NFwarrior with NF1 (#neurofibromatosis) who now feels the sky isn't a limit for him.
For years we have been saying that those with Neurofibromatosis (NF1) can do anything just given the chance @thomasyoungt38 has just proved that.... Well done you - can't get better than a gold! #NFAwareness #Tokyo2020 #Gold #ParalympicsGB
What a totally lovely person @GabyRoslin @BBCRadioLondon is, such a relaxed interview with our rather awesome patron @rakieayola, great coverage of Neurofibromatosis & her upcoming role in #ThePact starting on #WorldNFAwarenessday #May17 #BlueGreen bbc.in/3tvKD3Z
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