We are looking back at the amazing fundraising over the past few years every Friday in our "Fundraiser Fridays"
Feeling inspired? peoplesfundraising.com/hub/nf2-bios...
Want to take part in the Big May 5K ?
Register here -- forms.gle/bBULY6wHHH7L...
#endNF2 #NF2awareness #Schwannomatosis #NF2
Delighted to introduce our new team member, volunteer & Ambassador, Michael Archer.
Michael is an influencer on instagram at @nf2.arch (give him a follow) he raises awareness of NF2, connecting many others around the world, sharing their story one at a time with "Voices of NF2" #schwannomatosis #NF2
On 11th march, our lead Clare and COO Jo attended the
@braintumourrsch.bsky.social members workshop which brings together scientists, clinicians, and funded research teams from across its Centres of Excellence.
Always a lovely day to meet other charities
#endNF2 #NF2awareness #NF2 #schwannomatosis
Brain Tumour Awareness Month shines a light on all types of brain tumours
Symptoms can disrupt
communication
independence
social interaction
Contributing to
frustration
isolation
low mood
uncertainty
anxiety
emotional strain
Reduced social contact
NF2 life changing
#endNF2 #NF2 #schwannomatosis
The current study at Plymouth & Manchester investigating retrovirals for NF2 related Schwannomatosis seeks 2 more participants to take part. Contact
Plymouth: Dr. Sarah Kingdon- Sarah.Kingdon@nhs.net
Manchester: Sadaf Naveed - sadaf.naveed@nca.nhs.uk
for more info to #ENDNF2
#schwannonmatosis #NF2
More than a language: culture, community and belonging!
Sign Language Week is a flagship awareness week for British Sign Language and Irish Sign Language,
We aim to be sharing some posts to mark #slw2026 as many in the NF2 community are deaf/HOH.
#endNF2 #NF2awareness #NF2 #schwannomatosis
Brain Tumour Awareness Month shines a light on all types of brain tumours — including benign (non‑cancerous) brain tumours - The type generally associated with NF2, which can still have serious effects because they grow inside the skull and press on important brain structures. #schwannomatosis #NF2
March is Brain Tumour Awareness Month
Raise awareness, educate the public
NF2 is categorised by benign tumours (vestibular schwannoma, schwannoma, meningioma and ependymoma)
Effects of benign tumours can be devastating, life changing and life threatening
#endNF2 #NF2awareness #schwannomatosis #NF2
An individual shared a summary of their medical journey, including multiple surgeries, 50+ MRIs, tumor treatments, and ongoing hearing tests. Living with NF2, they highlight resilience and say life is about meaning, not being pain-free. #NF2 #RareDisease #MedicalJourney #Resilience
Recording available now! For those who missed it or would like to watch again, the "Understanding NF2-SWN Today" webinar recording is now available.
Here is the link: buff.ly/y4N6DhV
#NF2 #schwannomatosis #ENDNF2
March is Brain Tumour Awareness Month
In recognition of this we are sharing this post from our friends over in Ireland at
@NF2pointofview
, they are over on X and Instagram and raise awareness about NF2. Give them a follow
#endNF2 #NF2awareness #NF2
#NF2support #nf2 #nf2family #schwannonmatosis
Benign tumours can press on important brain areas.
Language, speech, or comprehension:
* Trouble forming words, slow or effortful speech
* Difficulty understanding language, speaking fluently but nonsensically
* Slurred or uncoordinated speech
* Voice changes, swallowing issues
#schwannomatosis #NF2
This series is about reflecting on people's perceptions and challenges of NF2 which can vary widely, and asks you to consider the challenges you might not have even realise existed but which those with NF2 have to navigate through every day life.
#endNF2 #NF2Schwannomatosis #nf2 #schwannomatosis
Meet the individuals living with NF2.
Today we meet Ignacio who was diagnosed aged 10.
"He suddenly could not move his left hand fingers, an MRI showed a cervical spine tumour. He went through two long surgeries to remove it, after which a left arm palsy remained.
#endNF2 #NF2 #schwannomatosis
From patient stories to expert-led webinars and research updates, our YouTube channel brings together science, advocacy, and hope.
🎥 Subscribe to our YouTube Channel “I Need a Cure”: buff.ly/gQCXobR
#schwannomatosis #NF2 #ENDNF2 #NF2Awareness
NF2 can affect night vision when the condition causes specific eye‑related changes especially retinal problems or nystagmus that make it harder to adapt in low light.
* Retinal changes reduce low‑light sensitivity
* Tumours can affect visual pathways
#endNF2 #NF2awareness #NF2 #aschwannomatosis
Come and join us at our Virtual Coffee Meet and meet other NF2ers. (carers/family welcome)
Date: 26th February 10.30am GMT
Have a chat, say hi or just enjoy the company
Sign up here:https://forms.gle/AAYReoshXgSm4kn77
Fully accessible with live captions
#endNF2 #NF2awareness #schwannomatosis #NF2
Have you checked out our fundraising hub?
peoplesfundraising.com/hub/nf2-bios...
You can support our charity by donating, getting involved in fundraising, or simply following us on social media.
#makeadifference
#endNF2 #NF2awareness #NF2 #schwannomatosis
Meeting the individuals living with NF2.
Today we meet Alex who says "I got diagnosed at 3 and started having scans at 11. I had a brain stem stroke (nf2 related) at 15 affecting my face, arm and leg honestly so depressed after thought i didn't have a future.
#endNF2 #NF2 #schwannomatosis
Fundraising News
This incredible group of friends are taking on Dubai's iconic Half Marathon - BurjtoBurj2026.
If you would like to read their story & donate to their efforts you can do so here
peoplesfundraising.com/donation/Run...
Tshirts are flying their way to them
#endNF2 #NF2 #schwannomatosis
academic.oup.com/neuro-oncolo....
TEAD inhibitor VT3989, in combination with Brigatinib preventsNF2-deficient meningioma and schwannoma growth
#NF2 #schwannomatosis
Meet the individuals living with NF2. A rare disorder affecting around 1 in 35000 people across the world.
Today we meet Tamara from Brazil.
She tells us "I have NF2 & live in Brazil. I can no longer hear or speak, and I walk very little My favorite place is the beach
#endNF2 #schwannomatosis #NF2
Learn about fertility issues caused by treatments for NF2-SWN. We have a 50% chance of passing NF2 on ( less if you are mosaic). Seek advise from professionals and your clinic
Photo credit NF2 Information & Services
#endNF2 #NF2awareness #schwannomatosis
#NF2support #nf2 #nf2family #LetstalkNF2
NF2 is inherited in an autosomal dominant pattern
A person only needs one altered copy of the #NF2 gene to have the condition.
Each child of an affected parent has a 1 in 2 (50%) chance of inheriting the altered gene.
Mosaic NF2 complicates inheritance & lower chance of passing on #schwannomatosis
NF2 Patient study in Manchester or Plymouth University
This clinical study needs just 3 more people so that the first phase can be completed and analysed.
See photo for eligibility
📷 Recruitment now open!
📷 Anyone interested please email joanne@nf2biosolutions,org
Please share
#schwannomatosis #NF2
You’re allowed to acknowledge that NF2 is hard.
You’re allowed to say the treatments are tough.
You’re allowed to feel frustrated that the world doesn’t always see the weight of it.
NF2 may not be cancer, but the journey can be just as challenging.
#endNF2 #NF2 #NF2Schwannomatosis #schwannomatosis
Continuing our knowledge today,
All about Hearing loss tumours
photo credit NF2 Information & Services
#endNF2 #NF2awareness #NF2schwannomatosis
#NF2support #nf2 #nf2family #nf2warrior #LetstalkNF2 #schwannomatosis
NF2 is caused by a mutation in the NF2 gene, which sits on chromosome 22. This gene normally produces a tumour‑suppressor protein called merlin (also known as schwannomin). When the gene is damaged, merlin cannot function properly, and tumours can form on nerves.
#endNF2 #NF2 #schwannomatosis
🔥Hot Off the Press | How do #PDAC cells survive extreme stress?
#NF2 & #Merlin Loss Fuels PDAC Survival
🔸In PDAC: NF2 loss → Merlin loss → cancer cells survive low nutrients & hypoxia → increased invasiveness, therapy resistance, & nutrient scavenging via #macropinocytosis.
Meet the individuals living with NF2. A rare disorder affecting around 1 in 35000 people across the world.
We are raising awareness of NF2 by sharing personal stories .Today we meet Immie. A powerful story about their daily life which consists mainly of the hospital.
#endNF2 #NF2 #schwannomatosis
