Resource hub
We are the table,
not the whole restaurant.
We do community, humour and honest conversation. We do not do clinical guidance, legal advocacy or fundraising. Here are the people who do those properly.
Before you click anything: none of this is medical advice, and none of these organizations are us. We link to them because people here found them useful.
People telling it straight
First-hand accounts. Not case studies, not press releases. People who have been through it, talking about it.
The "Lucky" Brain Tumor
Emily was diagnosed with an acoustic neuroma at 27. She covers hearing loss, balance, facial paralysis and going back to work, with no bravery speeches.
Where she found community online — her own list of places to land
Hearing loss when you are the boss — disclosure at work
Episodes worth starting with
If you want one person’s story rather than a whole archive, start here.
Beyond Brain Tumours
Hosted by survivor Ben Seewald for the Brain Tumour Foundation of Canada. Survivors, carers and researchers, including the emotional side nobody schedules time for.
Aunty M Brain Tumours
Claire Bullimore collects survivor stories and interviews with clinicians.
Anya’s story — from first headaches through surgery and rehab
Places to find other people
Peer groups, mentoring and forums. Some are diagnosis-specific in a way we deliberately are not, which is exactly why they are useful when you want that.
Acoustic Neuroma Association (US)
Local support groups, a peer mentor programme, and a directory of clinicians who actually treat these regularly.
British Acoustic Neuroma Association
UK regional meetups, virtual groups on specific things like facial palsy and tinnitus, and an annual patient conference.
UK brain tumour support
Three organisations people here mention repeatedly. The Brain Tumour Charity is particularly good on explaining a diagnosis to children.
Brainstrust — navigating decisions and clinical questions
NF2-related schwannomatosis
For the genetic side, including SMARCB1 and LZTR1 variants.
Understanding NF2 — a plain-language series with Prof. Gareth Evans
Cure NF2 Foundation — formerly NF2 BioSolutions
If your difference is not a schwannoma
Most of the list above grew out of one diagnosis. This table did not. These two work across visible difference generally, whatever put it there.
Changing Faces
The UK charity for anyone with a visible difference. Workplace guidance, skin camouflage, and advocacy when someone treats you badly for how you look.
Facial Palsy UK
Rehabilitation, specialist referrals and practical help for facial paralysis from any cause.
For your care team, or for a 3am deep dive
The clinical literature. Dense, and not written for patients, but useful if you want to know what your doctors are working from, or if you want to hand something to a GP who has not seen this before.
International clinical guideline
The first comprehensive international guideline for diagnosing, treating and monitoring schwannomatosis, including genetic screening and pain management.
ERN GENTURIS guideline — European Journal of Human Genetics, open access
Quality of life research
A review of physical, emotional and social wellbeing across NF1, NF2 and schwannomatosis, arguing for care that treats more than the tumour.
Mayo Clinic teaching podcast
Made for clinicians rather than patients: a neurosurgeon and an ENT specialist on diagnosis and current treatment options.
Know something that belongs here?
If a group, podcast or person got you through it, tell us and we will add them. This list is only as good as the people on it.