ChildhoodTumourTrust @ChildhoodTT
We are a UK based charity supporting children, young people & their families with the genetic condition Neurofibromatosis Type 1. NDA17 Winner #CTT childhoodtumourtrust.org.uk UK Joined March 2016-
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Day 4 of Georgie's facts. The majority of those with NF1 are looked after by healthcare professionals who lack specialist knowledge of NF1, and without national guidelines it means care can be very hit and miss. We are trying to change this. #NFAwareness #GeorgiesNFFacts
Day 4 of Georgie's facts. The majority of those with NF1 are looked after by healthcare professionals who lack specialist knowledge of NF1, and without national guidelines it means care can be very hit and miss. We are trying to change this. #NFAwareness #GeorgiesNFFacts
Thank you to Alex and his family for sharing their #NF1 journey and for motivating us to dig deeper, care harder and act with greater urgency to find more solutions. Learn more about Alex’s story: springworkstx.com/patients/neuro… #EndNF #NFAwarenessMonth
What a perfect picture of Patches first cuddle. A great start to NF Awareness Month #NFAwareness #Patches
Day 2 of Georgies NF Facts for NF Awareness Month #NFAwareness #GeorgiesNFFacts
Day 2 of Georgies NF Facts for NF Awareness Month #NFAwareness #GeorgiesNFFacts
Georgie's NF Facts are now tradition for @ChildhoodTT . Her first fact is that May is Neurofibromatosis Month #GeorgiesNFFacts #NFAwareness
And its only a couple of weeks away - Please support @loustar76 this is not a walk in the park, which she may well wish she had now signed up for!!xx
And its only a couple of weeks away - Please support @loustar76 this is not a walk in the park, which she may well wish she had now signed up for!!xx
A hard secret to keep but today we can shout it out. Thank you to absolutely everyone who donated & the celebrities who helped to raise so much money for small charities likes ours. This grant will help those affected by NF1 know that they are not alone @makenoise #MakeSomeNoise
"Grateful beyond words! After 2 years of chemo thanks to @Prizes4GoodCauses, through CTT we enjoyed a beautiful week at @ParkResorts Great Yarmouth. A cherished time with family after a tough journey. Deeply thankful for this generous gift. ❤️ #Gratitude #FamilyTime"
Introducing a special new book designed to help Patches cope with the loss of his Grandpa Made possible by the Sandell family with an introduction by mum, Jannine. This story is close to our hearts inspired by Harry's memory. Stay tuned for ordering details! #NF1 @Sophies_Stories
Last year £3000 was raised by Richard Yates, along with Sian Evie & her incredible family at a bingo & and entertainment evening which was split between @ChildhoodTT @CrohnsColitisUK @mssocietyuk This has now been matched by #ToyotaManufacturingUK Quite simply - thank you
Wow -look what NF Warrior Lily did today - @BritishBakeOff winner #MattyEdgell awarded Lily 2nd place in the Spring Into Spalding Bake Off. All your CTT zoom cookery sessions with @AMrsbunthebaker have really paid off @makenoise We are all beaming with pride. #NF1
Our young adults taking part in #WearAHatDay2024 - many of whom are affected by a brain tumour - ALL of them have NF1. More research needs to be done into NF1 and brain tumours. #BrainTumourAwareness #NeurofibromatosisType1 #NF1 @braintumourrsch
At @ChildhoodTT we have a great way for siblings of children with NF1 to bond: virtual cookery sessions via Zoom with @AMrsbunthebaker It's not just about food, it's about creating memories, support and lots of chat! 🍳💕 #TogetherStronger @makenoise #NF1
Thank you to @loustar76 for writing the forward for Patches' new adventure - A delightful story written for @ChildhoodTT by @Sophies_Stories Join Patches on his journey as he bravely prepares for his very first MRI. Order here forms.office.com/e/uxwgQDx5iV #NF1 #MRI
Thrilled to announce @RakieAyola is jumping alongside @lorrainestanley in a skydive for CTT. Prepare for courage, heart, & an adrenaline rush as they join supporters across the UK in leaping for NF1. Let's show them our unwavering support! bit.ly/3xaEhic #NF1
Very proud of this. So grateful to @ChildhoodTT for their support in the making of Hedgehog. #shortfilm #filmfestival #nf1 #Neurodiversity #RepresentationMatters @GenesisCinema @LondonIFF
Very proud of this. So grateful to @ChildhoodTT for their support in the making of Hedgehog. #shortfilm #filmfestival #nf1 #Neurodiversity #RepresentationMatters @GenesisCinema @LondonIFF
Exciting news! The trailer for "Hedgehog" is finally here! A coming-of-age journey of a teenage girl living with NF1. 🎥 Don't miss its first big screen premiere on April 21st at the @LondonIFF #NF1Awareness
Get creative for our 5K Any Way challenge . Whether you walk, run, push, or swim your way through, every step counts towards making a difference. Let's come together as a family & community to support those with NF1. Register for your fundraising pack bit.ly/43uKnWG
We are delighted and grateful to have received a one off capital grant from @TheClothmakers. Thank you #NF1 #Neurofibromatosistype1
The magic of a @ChildhoodTT zoom cookery session with @AMrsbunthebaker Alfred is not only learning a lifelong skill but also finding comfort in knowing he's not alone Virtual connections creating real bonds! #NF1 #Neurofibromatosis #ChildrensMentalHealth @makenoise
Children's Tumor Fdn @ChildrensTumor
7K Followers 835 Following The Children's Tumor Foundation is dedicated to ending NF, a group of genetic conditions that cause tumors to grow all over the body, through research.
Rakie Ayola💜 Still.. @RakieAyola
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Nerve Tumours UK @NervetumoursUK
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NF2 BioSolutions UK &.. @nf2biosolution1
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Neurofibromatosis Net.. @nfnetwork
4K Followers 149 Following Neurofibromatosis (NF) Network is the national non-profit serving individuals affected by neurofibromatosis. Leading NF Advocacy, Building NF Community.
NFIreland @NfIreland
415 Followers 276 Following At NF Ireland we aim to be a voice for NF patients, carers and their families. Reg Charity: CHY 6657
Adam Pearson @Adam_Pearson
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Adam Smethurst 🎭�.. @adamsmet66
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NF Bot @NFBot2
906 Followers 2K Following Neurofibromatosis\Schwannomatosis Bot-Looking to spread new publications, news, & social media (reddit\twitter). Welcome comments\suggestions to @DrezBoston
Sharon White 💙OBE .. @SAPHNAsharonOBE
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🎗Dottie’s Journe.. @Dotties_journey
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Lynne P. Taylor, M.D. @neulpt
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Shanty Productions @ShantyProds
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Patrick @notepaddy
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Leigh Duncan @lduncan89
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Tera Waddles @TeraWadd
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Theodora C C @GiveaGiggle
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Mik 🦥 @mikaylaluckie
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Christine Pratilas MD @CPratilasMD
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David @davidbcohn
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Nf Aware Nigeria @NFAwareNg
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Tim Wright - Mental S.. @WrightchoicesLC
176 Followers 929 Following I help families affected by Neuro Conditions, to build strength and confidence to push past limitations and navigate challenges to create a life of contentment.
David Grant-Roberts @grantrobots
854 Followers 876 Following Geordie, surrogate Yorkshireman • Charity Director @YorkshireBTC 💙💛🤍• Husband, Dad & #adopter 👨👨👦👦 • Lover of @nufc ⚽️⚫️⚪️⚫️⚪️
UK School Trips by Cl.. @UKSchoolTrips
27K Followers 30K Following For 18 years we've been helping teachers & educators connect directly with the UK's best school trips & workshop providers to bring learning to life.
EDEN Study @UoM_edenstudy
8 Followers 66 Following The main aim of the EDEN study is to investigate early social, communication & attention development in infants with NF1. The University of Machester
GAIN @gaincharity
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Sidney Glasshoff @Sidneysnfstory
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champs @kejr35778464
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arnoldsuhardi @arnolsuhardi
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369 Followers 5K Following 🚀 Welcome to my profile! I'm Toliha pro from MarketEdge Int. A🎯 crowdfunding marketing expert 📈.
Jesús Morales @morales001Je
216 Followers 3K Following I will keep everyone updated on him as much as I can. Thank you in advance to everyone who donates! ❤️
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Children's Tumor Fdn @ChildrensTumor
7K Followers 835 Following The Children's Tumor Foundation is dedicated to ending NF, a group of genetic conditions that cause tumors to grow all over the body, through research.
Rakie Ayola💜 Still.. @RakieAyola
16K Followers 3K Following Bafta Award Winner next in #MomHowDidYouMeetTheBeatles @ChichesterFT Patron @childhoodtt Trustee @actorschildren
Nerve Tumours UK @NervetumoursUK
2K Followers 748 Following Formerly “The Neuro Foundation”. We fight to support those living with conditions that cause nerve tumours. T: 0208 439 1234
NF2 BioSolutions UK &.. @nf2biosolution1
418 Followers 421 Following NF2 BioSolutions UK & Europe is a UK charity and an arm of the global NF2 BioSolutions organisation. Accelerating genetherapy & immunotherapy for a cure to NF2
Neurofibromatosis Net.. @nfnetwork
4K Followers 149 Following Neurofibromatosis (NF) Network is the national non-profit serving individuals affected by neurofibromatosis. Leading NF Advocacy, Building NF Community.
NFIreland @NfIreland
415 Followers 276 Following At NF Ireland we aim to be a voice for NF patients, carers and their families. Reg Charity: CHY 6657
Beacon for Rare Disea.. @RareBeacon
12K Followers 11K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
Adam Smethurst 🎭�.. @adamsmet66
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NF Bot @NFBot2
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Sharon White 💙OBE .. @SAPHNAsharonOBE
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617 Followers 492 Following mother of boys..train guard ..parent of a child living with an inoperable brain tumour,we need a cure .Dedicating my time to highlight awareness of NF #endnf
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16K Followers 2K Following National charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign @rarediseaseuk and support network @SWAN_UK.
NF1 Project @Nf1Project
240 Followers 414 Following An international research project aimed at improving understanding of how genetics affects the number of skin neurofibromas a person with NF1 may develop.
Cambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
Wendy Nicholson MBE R.. @WendyJNicholson
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NIRDP @NI_RDP
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BPNA @BPNA_org
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Rachel @rachentwistle
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Children's Commission.. @ChildrensComm
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Richard Foord MP @RichardFoordLD
14K Followers 471 Following Member of Parliament for Tiverton & Honiton • @LibDems Defence Spokesperson • Proud Dad • Former Army Major • Contact: [email protected] • He/Him
BDA Gastroenterology .. @bda_gastro
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Horizon @HorizonNews
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Matt Wilkinson @Matt_Wilkinson
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Catherine @Thepiratemum
155 Followers 617 Following Mum to #alfredthepirate, home baker, keen traveller.
Dr. Stephanie Joy Bou.. @SJB1120
166 Followers 250 Following PhD working to #EndNF | Ravenclaw | Dice Maker | TAZ fan | NADDPODer | 20 sides to every story | I had the time of my life fighting dragons with you 🫶🏻
Conrad Cordova @Conrad_FNP
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16 Followers 84 Following 💭Free and Confidential Service for Young People 11-25 🕕Monday - Friday 2-6pm 🌻Counselling, Emotional Support, Advice, Guidance & Workshops!
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40 Followers 87 Following
Namrata GR Raut (she/.. @NamrataGRRaut
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DCN LSBU @DCN_LSBU
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Hahn Lab @IHahnlab
187 Followers 156 Following How do neurons develop and how are they maintained? To understand this we investigate how signalling is translated into coordinated cytoskeletal changes.
Nf Aware Nigeria @nfaware_ng
65 Followers 29 Following Bringing visibility to neurofibromatosis one post at a time. 💚💙 'If we are not seen, we cannot be heard.'
Philippa Bishop @MrsBish71
929 Followers 314 Following Head of Training - Institute of Health Visiting (iHV) @iHealthVisiting Views - all my own
Harry's HAT Charity @HarrysHAT5
823 Followers 3K Following Supporting UK families affected by paediatric #hydrocephalus. We raise awareness, fund research/education and provide sign-posting for families.
Cambridge Children's .. @CambChildrens
2K Followers 593 Following Together @CUH_NHS @CPFT_NHS @Cambridge_Uni will build the first East of England children’s hospital integrating mental, physical health & research #AWholeNewWay
HBA Support @hba_support
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Dr Jacinta O'Shea @Jacinta_O_Shea
391 Followers 498 Following If you're looking down on others ensure it's to give them a hand up. Children's rights. Equality. Mental health. Neuroscientist. Tweets unrelated to my employer
NIHR BioResource @NIHRBioResource
2K Followers 2K Following National panel of 250,000+ volunteers, each consented to take part in experimental research and early phase clinical trials based on genotype and/or phenotype.
BSGM @BritSocGenMed
3K Followers 2K Following The British Society for Genetic Medicine provides a forum for professionals involved in #genetics and #genomics as a clinical service and research.
Please pray for me and my family at this difficult time. May God give me strength. That phone call this morning. My son has passed away. 💔💧42 years old. 🕊My everything💔💧
Thank you to Alex and his family for sharing their #NF1 journey and for motivating us to dig deeper, care harder and act with greater urgency to find more solutions. Learn more about Alex’s story: springworkstx.com/patients/neuro… #EndNF #NFAwarenessMonth
Meet Brandi, a courageous NF 1 fighter! Read more about her in the caption. Join Brandi at the Kansas City #nfstrong walk on June 1... runsignup.com/Race/MO/NorthK… Or fundraise for her team Bezays Walkn Rollers. #connectingnf #nfnetwork
Late to post this 🤦🏽♀️ I am so proud of you 💙💚 @ChildhoodTT #NeurofibromatosisAwarenessMonth #NFWarrior #Fact1 #Day1
Late to post this 🤦🏽♀️ @ChildhoodTT #NeurofibromatosisAwarenessMonth #NFWarrior #Fact2 #Day2
Join us at NF Academy 2024 in Rotterdam this summer. Dive into discussions, activities, and gain insights into NF1, NF2, Schwannomatosis, and more. Open to patients and siblings aged 19-35. Apply by May 17th, 2024. Learn more: nf-patients.eu/nf-academy-202… @NfPatients @ChildhoodTT
@ChildhoodTT @BGT Literally cried all.the way through this 😢
Ravi's Dream Team gave us chills with their emotional #BGT Audition 🥹 Watch their incredible #GoldenBuzzer moment: youtube.com/watch?v=ZNnZzW…
A huge shoutout to absolutely every amazing person running for so many awesome causes #londonmarathon2024 espe @BrainTumourOrg @ChildhoodTT @shitscaredmum xxxxyou are amazing!
@ChildhoodTT Well done - this is amazing! Thank you so much for supporting Crohn's & Colitis UK 💜
Have you heard of Cards2Warriors? We support all illness warriors, and snail mail is our jam! We believe that there's something special about finding a bit of hope and cheer in your mailbox. We invite YOU to sign up! cards2warriors.org #illnesswarriors #cards2warriors
Wow -look what NF Warrior Lily did today - @BritishBakeOff winner #MattyEdgell awarded Lily 2nd place in the Spring Into Spalding Bake Off. All your CTT zoom cookery sessions with @AMrsbunthebaker have really paid off @makenoise We are all beaming with pride. #NF1
@GillianA @davidduchovny We would like to express our deep gratitude to Gillian Anderson and David Duchovny for their generous support. Their advocacy for NF has helped shed light on this rare genetic condition. Don't miss your chance to participate, as tomorrow, March 31, is the last day to enter. ❤️
Enter the prize draw for this signed quilt (by me & @davidduchovny) to raise funds for @nfnetwork! Cost to enter: $10 Enter here: interland3.donorperfect.net/weblink/weblin… To enter: click the link and select “X-Files Quilt” from the menu under “contributing towards”
@NoContextHumans “Since her death in 1979, the woman who discovered what the universe is made of has not so much as received a memorial plaque. Her newspaper obituaries do not mention her greatest discovery. […] Every high school student knows that Isaac Newton discovered gravity, that Charles…
Apply to be a Mentor on the Patient Group Mentoring Programme! Support mentees in a wide range of areas including charity management, communications, fundraising, life sciences and many more. Have something to offer? We want to hear from you! 👉 ow.ly/veUz50QXux8
We are buzzing to announce £20m #NationalLottery funding to inspire more people to take climate action across the UK 🐝 You don’t need to be involved in climate action to apply. We want to hear from partnerships with bold, exciting ideas inspired by people’s everyday activities.
Pupils at @SouthdownCP raised more than £300 in memory of their classmate Aaron Wharton 🎩 In 2023, Aaron took part in the school’s #WearAHatDay celebrations. This week, his mum Nicola wore Aaron’s hat as she unveiled a plaque dedicated to Aaron ➡️ bit.ly/4aPYBEf
Happy Easter for Team NIRDP, we will be closed on Friday, March 30th, and Monday, April 1st. 🐣🐰
With the DHP annual conference being up in Stirling this year. It would obviously be rude not to head up a day early to settle in. Even ruder not to stay an extra night so I can explore Edinburgh the following day . . . Wouldn’t it 😂
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