Nf2UK (@Nf2UK) profile picture

Nf2UK

@Nf2UK

Dog-eared advocates still hoping for a cure for NF2 related Schwannomatosis

Joined February 2013
  • Tweets3.7K
  • Following93
  • Followers318
21Media
Photo by Nf2UK (@Nf2UK)Photo by Nf2UK (@Nf2UK)Photo by Nf2UK (@Nf2UK)Photo by Nf2UK (@Nf2UK)Photo by Nf2UK (@Nf2UK)Photo by Nf2UK (@Nf2UK)
Gene therapy and genome-editing for schwannoma in NF2-related schwannomatosis: current understanding and future directions pubmed.ncbi.nlm.nih.gov/4005…
Gene therapy and genome-editing for schwannoma in NF2-related schwannomatosis: current understand...

Gene therapy and genome-editing for schwannoma in NF2-related schwannomatosis: current understand...

NF2-related schwannomatosis (NF2-SWN) is a rare genetic disorder characterized by bilateral vestibular schwannomas. NF2-SWN represents a difficult management problem with most patients facing...

pubmed.ncbi.nlm.nih.gov
2
25
New CTF-supported research identifies Apelin as a potential target in NF2-related meningiomas. Disrupting Apelin substantially reduced blood-vessel growth in a lab model—an early but promising direction for tumors with few options beyond surgery. ctf.org/news/ctf-funded-stud…
Image from Children's Tumor Fdn (@ChildrensTumor)
1
2
227
Cancer drugs reduced chronic nerve pain sensitivity in preclinical models, pointing to BRAF as a driver of pain signals after nerve injury. @scisignal medicalxpress.com/news/2026-…
Preclinical study points to cancer drugs as possible treatments for chronic nerve pain

Preclinical study points to cancer drugs as possible treatments for chronic nerve pain

Researchers at The University of Texas MD Anderson Cancer Center have found new evidence that BRAF, a protein commonly involved in cancer, plays a key role in developing, amplifying and maintaining...

medicalxpress.com
1
8
17
3,350
Performing cochlear implantation immediately after #VestibularSchwannoma resection is feasible and offers long-term functional benefits for most patients. #Neurotology #CochlearImplant ow.ly/VsiC50Zk9eJ
Image from Otology&Neurotology (@OandNonline)
9
7
792
Medroxyprogesterone injections showed the highest meningioma risk in a 3 million-woman analysis, while lower-dose hormonal IUDs did not; the increase faded after stopping in most cases. @jamanetworkopen medicalxpress.com/news/2026-…

Not all birth controls are equal, some are linked to higher risk of brain tumors, study finds

Meningiomas are the most common brain tumors in adults, accounting for 38% to 42% of all primary central nervous system tumors. According to 2021 WHO data, 874 million of the world's 1.9 billion...

medicalxpress.com
7
9
3,768
Repurposing anti-retroviral drugs to treat NF2-related tumours: a protocol for a phase 0 trial (RETREAT) pubmed.ncbi.nlm.nih.gov/4230…
Repurposing anti-retroviral drugs to treat NF2-related tumours: a protocol for a phase 0 trial...

Repurposing anti-retroviral drugs to treat NF2-related tumours: a protocol for a phase 0 trial...

ISRCTN10422213.

pubmed.ncbi.nlm.nih.gov
2
1
30
We are delighted to let you know that our charity trustee and NF2-SWN expert Prof. Gareth Evans has received an MBE in the King’s birthday honour list. He established the UK highly specialised service for NF2-SWN. An incredible lifetime contribution This is absolutely deserved
Image from Cure NF2 Foundation UK & Europe (@nf2biosolution1)
2
2
50
Cancer jab shown to eradicate whole tumours in patients in promising new trial lbc.co.uk/article/health-can…
Cancer jab shown to eradicate whole tumours in patients in promising new trial | LBC

Cancer jab shown to eradicate whole tumours in patients in promising new trial | LBC

Doctors have praised “unprecedentedly strong responses” to an injection that eradicated entire tumours in otherwise treatment-resistant cancer cases during a trial.

lbc.co.uk
1
1
60
The evolving landscape of NF gene therapy: Hurdles and opportunities pmc.ncbi.nlm.nih.gov/article…
The evolving landscape of NF gene therapy: Hurdles and opportunities

The evolving landscape of NF gene therapy: Hurdles and opportunities

Neurofibromatosis type 1 (NF1)- and NF2-related schwannomatosis are rare autosomal dominant monogenic disorders characterized by a predisposition for nerve-associated tumors. Current treatments focus...

pmc.ncbi.nlm.nih.gov
1
1
2
94
Role of NF2 Mutation in the Development of Eleven Different Cancers pmc.ncbi.nlm.nih.gov/article…
Role of NF2 Mutation in the Development of Eleven Different Cancers

Role of NF2 Mutation in the Development of Eleven Different Cancers

In this study, we sought to understand the role of NF2 gene mutation in the carcinogenesis of sporadic cancers. NF2 gene mutations are noted in several central nervous system tumors, solid-organ...

pmc.ncbi.nlm.nih.gov
1
36
Don't miss our webinar this Friday in recognition of Rare Disease Day! Registration is still open here: buff.ly/rStG47w English subtitles will be available during the transmission. The webinar will be recorded and published on our YouTube Channel "I Need a Cure".
Image from Cure NF2 Foundation (@NF2BioSolutions)
1
45
Calling NF2ers in the UK Are you eligible for this study? Please get in touch with Plymouth or Manchester if so. Just 3 more participants needed.
Brain Tumour Research (@braintumourrsch) profile pictureBrain Tumour Research@braintumourrschFeb 23
Research Study Seeks Participants with NF2-Related Schwannomatosis and Skin Tumours. 🔬 A UK research study is inviting adults living with NF2-related schwannomatosis (formerly neurofibromatosis type 2) who have skin tumours to take part in an early-stage investigation led by Professor C. Oliver Hanemann, consultant neurologist at Peninsula Medical School, Plymouth. Currently, there are no approved drug treatments for the tumours caused by NF2-related schwannomatosis. Professor Hanemann’s team has identified two promising drug candidates that could change that. This study will help researchers see whether these drugs show early signs of effectiveness and are suitable for larger clinical trials. 📍 The study will take place in Plymouth and Manchester. 👥 Up to 16 participants will be enrolled. 🧬 Participants will provide skin tumour biopsies and blood samples before and after treatment. While there is no immediate personal benefit, the information gained could be an important step toward future treatments. Eligibility: 18 years or older Living with NF2-related schwannomatosis Have skin tumours To learn more or express interest contact: Plymouth: Dr. Sarah Kingdon- [email protected] Manchester: Sadaf Naveed - [email protected]
Image from Brain Tumour Research (@braintumourrsch)
2
1
315
Spatial mapping of immune cell environments in NF2-related schwannomatosis vestibular schwannoma nature.com/articles/s41467-0…

Spatial mapping of immune cell environments in NF2-related schwannomatosis vestibular schwannoma

Nature Communications - Bilateral vestibular schwannomas (VS) are the main feature of NF2-related schwannomatosis, but the immunological landscape of VS is poorly understood. By performing imaging...

nature.com
1
1
2
100
New Research Points to Shared Treatment Possibilities for NF2-SWN Tumors nfnetwork.org/pages-news/new…
2
27
History and clinical epidemiology of NF2-related schwannomatosis pubmed.ncbi.nlm.nih.gov/4116…
History and clinical epidemiology of NF2-related schwannomatosis - PubMed

History and clinical epidemiology of NF2-related schwannomatosis - PubMed

NF2-related schwanomatosis (NF2-SWN) (previously Neurofibromatosis 2) as characterised by bilateral vestibular schwannomas (VS) was first described in 1822. However, due to the erroneous conflation...

pubmed.ncbi.nlm.nih.gov
33
RIP Marie Drew 1942-2025 an early NF2 warrior, an advocate through her work with NF2ADVOCURE and tireless support for others through various support groups inc. the NF2 Crew .. and a true friend. 💔
62
The Geoffrey Jefferson Brain Research Centre in Manchester has secured a £700,000 grant to accelerate NF2 research, funding studies into the mechanisms of brain tumours and inflammation pathways in vestibular schwannomas and related tumours. Article here: buff.ly/TPsAMlj
Image from Cure NF2 Foundation (@NF2BioSolutions)
4
9
398
So as the eminent Prof DG Evans finally retires all we can do is wish him well in his much reserved retirement and say thank you - You Made a Difference .. 👏
1
2
119
A new cell model to advance research into NF2-related schwannomatosis biotech-spain.com/en/article…
65
Gene therapy and genome-editing for schwannoma in NF2-related schwannomatosis: current understanding and future directions pubmed.ncbi.nlm.nih.gov/4005…
Gene therapy and genome-editing for schwannoma in NF2-related schwannomatosis: current understand...

Gene therapy and genome-editing for schwannoma in NF2-related schwannomatosis: current understand...

NF2-related schwannomatosis (NF2-SWN) is a rare genetic disorder characterized by bilateral vestibular schwannomas. NF2-SWN represents a difficult management problem with most patients facing...

pubmed.ncbi.nlm.nih.gov
1
85
Load more