Neurofibromatosis type 2 has been renamed 𝘕𝘍2-related schwannomatosis.

Schwannomatosis is the umbrella term. Other types of schwannomatosis include 𝘚𝘔𝘈𝘙𝘊𝘉1-, 𝘓𝘡𝘛𝘙1-, and 22q-related.

doi.org/10.1016/j.gim.…

Happy NF Awareness Month! 🎉
We have all kinds of great things in store!

Go here to see how you can participate: nfnetwork.org/fundraising/nf…

#nf #nf 1 #NF2 -SWN #SWN #neurofibromatosis #schwannomatosis #nf awareness #connectingnf #endnf #nf network

Plexiform schwannoma:
✅Benign peripheral nerve sheath tumor
✅usually solitary
✅mostly sporadic
✅can occur in NF2 and schwannomatosis
✅subcutaneous & predilection to limbs
✅multinodular growth pattern
✅nuclear palisades “Verocy bodies”
#PathTwitter #neuropath #bstpath

Now, here's a great example of proactive people spreading NF Awareness! They all obtained proclamations for NF Awareness Month in their county and states. Bravo to all of you!!!!

#nf #nf 1 #NF2 -SWN #SWN #neurofibromatosis #schwannomatosis #nf awareness #connectingnf #endnf

We have BSL fingerspelling from Oscar today for #SignLanguageWeek
If you want to take part send us your video.
#endNF2 #NF2awareness #NF2Schwannomatosis #schwannomatosis
#NF2support #nf2 #nf2 family #nf2 warrior #LetstalkNF2 #BSL
#nf2 charity #StrongerTogetherAgainstNF2

If you're curious about deaf and disabled academic life and life in general for people with complex health issues, you can read my new interview with Children's Tumor Foundation about my Neurofibromatosis 2-related Schwannomatosis diagnosis:

ctf.org/news/a-convers…

Deaf Awareness Week
#endNF2 #NF2Schwannomatosis #schwannomatosis
#NF2support #nf2 #nf2 family #nf2 warrior #LetstalkNF2
#nf2 charity #nf2 gene #nf2 chromosome22 #nf2 research #nf2 ismyteam #nf2 awarenessday #nf2 journey #StrongerTogetherAgainstNF2
#BeDeafAware #Deafness #NF2Deafness

NEUROFIBROMATOSIS. 1/4
Trastorno genético que afecta al sistema nervioso, causando el desarrollo de tumores benignos en los nervios y la piel. Se clasifica en tres tipos principales: neurofibromatosis tipo 1 (NF1), neurofibromatosis tipo 2 (NF2) y schwannomatosis.

Today, on World #NF2 and #Schwannomatosis Awareness Day, we want to raise #awareness of the challenges faced by individuals living with these diseases. Help us and record a video saying: Neurofibromatosis, I can say it, can you? Because it's hard to say, but harder to live with!

Shout out to Gareth running tomorrow's Leeds Marathon - his dad has #Schwannomatosis & his aunt had #NF . 'I’ll be completing the 26.2 miles on behalf of those who never got the chance to run & those who no longer can.'

Support his efforts: justgiving.com/page/ggm262

#NF Support

Forever learning from Dr. Soni (Pranay Soni)! He gave a fantastic Cleveland Clinic Neurosurgery Grand Rounds this morning on NF2-related schwannomatosis. (Also he took amazing eclipse photos, as seen on the last slide 🌖)

We are so thankful that UCLA invited Dr. Slattery and Dr. Peng to speak at your NF2/Schwannomatosis: State of the Art 2023 Workshop. Education has always been a significant part of our mission here at House, and it was a pleasure sharing our experience with UCLA.

We are 5 days away from NF Awareness Month and we are ready to celebrate! 🎉 See caption for details.

#nf #nf 1 #NF2 -SWN #SWN #neurofibromatosis #schwannomatosis #nf awareness #connectingnf #endnf #nf network

May is NF Awareness Month!
Come learn about NF2-Schwannomatosis at the UCLA Brain Tumor Conference.
'Hearing Rehabilitation' is NOW STREAMING!

Register for the IN-PERSON session MAY 11 at uclahealth.org/medical-servic…
#EndNF #NF2 #Schwannomatosis

$BNGO - Bionano

25-Mar-2024

6 U.S. Universities/Hospitals/Medical Centers publish in the American Journal of Clinical Pathology a paper titled :

'Four distinct ipsilateral vestibular schwannomas: A case of mosaic NF2-related schwannomatosis'

where they explain that it is

Oscar has NF2 related Schwannomatosis and his brother Dylan looks out for him and importantly fundraises to raise money for research into new treatments or a cure into NF2. He raised over £10,000 & received an award from Nottingham Police. #NationalSiblingsDay2024 Sibs ❤️

Read the review around the natural history of #Meningioma in NF2-schwannomatosis, underlying #genetic , #molecular , and #immune microenvironment changes, current management paradigms, and potential therapeutic targets:

buff.ly/46B6JXH

Dr. Pranay Soni will be discussing #NF -2 related #schwannomatosis at #Grand #Rounds tomorrow morning.

Join us at 7 AM EST! 🧠👨🏽‍🏫

tinyurl.com/msttynec

As we approach Rare Disease day we want you to meet the real people affected by our rare disease NF2 related schwannomatosis and to read their story. #ENDNF2