Did you know?
Payroll giving allows employees to donate directly from their salary to approved charities
For more info check out www.gov.uk/payroll-giving
We are members of 2 schemes:
1. Benevity ( benevity.com)
2. Payroll Giving (payrollgiving.co.uk)
#ENDNF2 #schwannomatosis

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

Brain Tumour Awareness Month takes place every March, and it shines a light on all types of brain tumours — including benign (non‑cancerous) brain tumours, which can still have serious effects because they grow inside the skull and press on important brain structures.
#ENDNF2 #schwannomatosis

Fundraising News
TeamImmie are taking on the Nine Edges Challenge in May to mark NF2 Awareness Day raising money for 2 charities @OscarsCharity & @nf2biosolution1
Support/donate here:
www.justgiving.com/crowdfunding...
We wish you the best of luck #ENDNF2 #schwannomatosis

We are looking back at the amazing fundraising over the past few years every Friday for "Fundraiser Friday"
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...
#endNF2

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

The Big May 5K - NF2 community charity fundraising event
Date: Sometime in May - you decide!
Location: You decide!
Distance: 5K, want a challenge? Do more, too much, do Less
Cant run? walk, jog, scoot or complete how ever you choose!
Sign up today!
forms.gle/YD2aicVT2MW6...
#ENDNF2 #schwannomatosis

Happy Mothers Day to all the mums out there - this is in recognitions of Sign Language week that starts tomorrow
#SLW2026 #endNF2 #NF2awareness #NF2Schwannomatosis #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

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

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

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

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

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