"Fundraiser Friday"
Need inspiration to raise funds for NF Awareness month & NF2 Awareness day (22nd May)
Feeling inspired? Check out the hub for your fundraiser www.peoplesfundraising.com/hub/nf2-bios...
Want to take part in the Big May 5K
Register here -- forms.gle/bBULY6wHHH7L...
#schwannomatosis
The viewpoint of a Clinical Psychologist! @NfPatients
Excellent interview with Dr. Louise Robinson is a Consultant Clinical NF2 Psychologist who works at Manchester University Hospital Foundation NHS Trust and The Christie Hospital in Manchester.
www.nf-patients.eu/magazine/how...
#endNF2
Characterizing Tumor-Induced Ataxia in a Vestibular Schwannoma Mouse Model
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
Come and join us at our Virtual Coffee Meet and meet other NF2ers. (carers/family welcome)
Date: 24th March 10.30am GMT
Have a chat, say hi or just enjoy the company
Sign up here: forms.gle/Rx5H75g7PomZ...
WE WILL BE EXPLORING MEDITATION & WELLBEING
#ENDNF2 #schwannomatosis
Today is International Women's Day it's no secret that NF2 BioSolutions would be nothing without the women who created it, driving us forward towards the day when we can finally #EndNF2.
Our fight would be nothing without the efforts of the women
#internatiionalwomensday #schwannomatosis
Some rare diseases become widely recognised while others remain almost invisible. It usually comes down to a mix of social, scientific, & economic forces that shape what the public hears about.
Awareness matters enormously in rare disease
#endNF2 #NF2awareness #Schwannomatosis
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
The Big May 5K - A NF2 community charity fundraising event, New challenge 5K!
Date: Sometime in May, you decide!
Location: You decide!
Distance: 5K or more, or less
Cant run? walk, jog, scoot or complete how ever you choose!
Sign up :
forms.gle/YD2aicVT2MW6...
Any questions? msg us
#schwannomatosis
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
A survey in our NF2-SWN science group attributed over 40 symptoms to NF2 this is just a few.
Its important to remember NF2 affects people very differently, there is wide variations.
Add yours in the comments!
#endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis
Meet the individuals living with NF2.
Today we meet David whose journey with NF2 started 3 years ago.
"I'm 44. I have hearing loss in one ear, a Facial Nerve Schwannoma and two other tumours and diagnosed me with NF2.
#endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis
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
A cochlea-sparing strategy for non-invasive control of intracranial schwannomas via peripheral irradiation and anti-PD-1 therapy enhanced by STING activation
The latest newsletter from our friends over at
@NfPatients
is now out and its a special NF2-SWN edition. You can read all about it here www.nf-patients.eu/magazine/res...
A close look at Meningiomas Clare Goddard from
@NF2BioSolutions
provided deep insights into the work they do & research
The International Day of Women & Girls in Science is celebrated annually on February 11th. The goal is to highlight the critical role women & girls play in science & technology communities & to strengthen their participation. Thankyou Abi & Grace for all you have done/are doing. #schwannomatosis
Research shows emotional distress is more common in NF2-SWN than in the general population & challenges of living with a long‑term neurological disorder and dealing with including stress and isolation. BUT there’s joy tucked into the small, ordinary corners of life.
#ENDNF2 #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
Meet the individuals living with NF2.
Today we meet Gabby - she is the epitome of "Never give up". "I was diagnosed with NF2 at 18yrs old in June 2025
I’m an athlete, so my NF2 diagnosis finally explained the balance issues, worsening vision, and hearing loss"
#ENDNF2 #schwannomatosis
Tinnitus Week 2026 will take place from Feb 2nd to to 8th, focusing on raising awareness about tinnitus and hearing health
Tinnitus is one of the earliest and most common symptoms of NF2‑related schwannomatosis
For more information about Tinnitus please go to
@uk_tinnitus
#endNF2 #schwannomatosis
Regardless of when you were diagnosed with NF2, you were in fact born with it - it is a genetic disorder and the mistakes that mutate the gene happen at conception or just after.
Mosaic NF2 is a form of NF2 where only some of a person’s cells carry the NF2 gene mutation
#endNF2 #schwannomatosis
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
Integrated proteomic and targeted Next Generation Sequencing reveal relevant heterogeneity in lower-grade meningioma and ANXA3 as a new target in NF2 mutated meningiomas
pubmed.ncbi.nlm.nih.gov/40562609/
Networks matter enormously in the world of the NF2 community.
When a condition affects only a handful of people, knowledge becomes scattered, expertise becomes isolated, unless people connect.
NF2 shapes communication, relationships, and daily life.
#StrongerTogether
#endNF2 #schwannomatosis
The effects of benign tumours can be devastating
They press on brain tissue or nerves - lead to
Difficulty concentrating
Memory problems
Pain or discomfort
Weakness or numbness
Balance or coordination problems
Hearing or vision loss
Reduced mobility
Physical and cognitive changes
#schwannomatosis
