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
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
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
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
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
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
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
Friday Facts series
Schwannomas arise from Schwann cells that insulate peripheral and cranial nerves
Meningiomas are Tumours of the meninges (brain/spinal cord coverings).
Ependymomas are Tumours of the ependymal cells lining the spinal canal and ventricles
#endNF2 #NF2awareness #schwannomatosis
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
Navigating uneven ground with NF2 can be surprisingly demanding, because the condition often affects balance, coordination, muscle strength, and sensation
NF2 requires a level of adaptability most people never have to develop. You’re constantly recalibrating
#endNF2 #NF2awareness #schwannomatosis
Meet the individuals living with NF2
Raising awareness sharing her story today we meet Claudia. from Italy.
"I inherited NF2 from my father & my 7 year old daughter inherited it from me. I hope with all my heart that the research continues"
#endNF2 #NF2awareness #schwannomatosis
Continuing our knowledge today,
All about Hearing loss tumours
photo credit NF2 Information & Services
#endNF2 #NF2awareness #NF2schwannomatosis
#NF2support #nf2 #nf2family #nf2warrior #LetstalkNF2 #schwannomatosis
Thats NF2, all those tumour types
1. Vestibular Schwannomas
The hallmark tumour of NF2
2. Meningiomas
Tumours of the meninges
3. Schwannomas (Non‑vestibular)
Tumours of Schwann cells
4. Ependymomas
Tumours arising from ependymal cells
#endNF2 #NF2awareness #Schwannomatosis
A snapshot of life with NF2 that you may not even notice exists.
Living with NF2 can feel like waking up each day on shifting ground — some mornings your body cooperates, other days it throws you a curveball you never saw coming. That unpredictability of NF2
#endNF2 #NF2awareness #schwannomatosis
NF2 has about 400 different genetic mutations on chromosome 22
These mutations fall into several categories:
* Nonsense mutations
* Missense mutations
* Frameshift mutations
* Splice‑site mutations
* Large deletions or rearrangements
* Mosaic mutations
#endNF2 #NF2awareness #NF2 #schwannomatosis
What does NF2 mean to you?
NF2 (also called NF2‑related schwannomatosis) is a genetic disorder where tumours grow on nerves in the brain, inner ear, &spinal cord. These tumours are usually schwannomas, meningiomas, or ependymomas.
HOPE for the future
#endNF2 #NF2awareness #NF2 #schwannomatosis
We would like to say a MASSIVE Thankyou to EVERYONE who contributed to our birthday celebrations - YOU ALL SERIOUSLY ROCKED IT!!
We cannot do anything without any of you!
THANKYOU FROM THE BOTTOM OF OUR HEARTS
Same time next year???
#endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis
#nf2
Today we celebrate our fundraisers of 2025, you have all been brilliant sharing photos and details of your fundraising. So much fun was had.
We thank you all for raising vital funds to help us change the lives of those with NF2 through our research.
#endNF2 #NF2awareness #NF2SWN #schwannomatosis
To Send or not to Send cards?
If you have decided to donate to charity this year instead of sending christmas cards, it would be great if you could consider us.
Donate here: www.peoplesfundraising.com/donation/nf2...
We thank you for considering us.
#endNF2 #NF2awareness #schwannomatosis #ENDNF2
Trustees Kim & Grace had the most amazing day on Thursday at Cambridge Rare Disease Network RareSummit 25.
We hope to bring you all the details very soon, lots to digest from the day.
#endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis
#NF2support #nf2 #nf2family #nf2warrior #LetstalkNF2
Another infographic to start the knowledge this week.
Thats NF2, all those tumour types
#endNF2 #NF2awareness #neurofibromatosistype2
#NF2support #nf2 #nf2family #nf2warrior #LetstalkNF2 #schwannomatosis
We are delighted to congratulate Grace and Adam on receiving their PhDs at the official graduation ceremony on Thursday 10th July - officially Drs!
We extend congratulations from everyone xxxx
#endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis
We are starting midweek knowledge about NF2 today, and, how it can affect us.
Did you know there were so many mutations in fact there are probably many more? There is so much variability with NF2, we are all different and we are all affected differently.
#endNF2 #NF2awareness #schwannomatosis
Every single person that talks about NF2 helps to raise awareness.
Your story not only raises awareness but helps others on their journey too.
RAISE YOUR VOICE, TELL YOUR STORY & RAISE AWARENESS
#endNF2 #NF2awareness #neurofibromatosistype2 #NF2SWN
#NF2support #nf2 #nf2family #schwannonmatosis
