NF2 Information & Services

06/04/2026

https://www.mdpi.com/1422-0067/27/9/3909

05/26/2026

Tumor (Benign or Cancer) Medical Options

https://www.instagram.com/reel/DXRS785jy8f/?igsh=MTd2dm9oODF5bDNreg==

05/22/2026

:
* Photo Overview

05/22/2026

May NF Month
May 22 Schwannomatosis Awareness Day
SWN are all located on Chromosome 22

May is Neurofibromatosis Month
May 22 is Schwannomatosis (SWN) Day
SWN: NF2), SWN: SMARCB1 (LZTR1), and SWN: Chromosome Ring 22

Like NF there is no Cure for any form of SWN
Research is needed.

05/17/2026

May NF Month
May 22nd is Schwannomatosis (SWN) Day
Schwannomatosis: NF2, SWN: SMARCB1 (LZTR1), and SWN: Chromasome Ring 22

May is Neurofibromatosis Month
May 22 is Schwannomatosis (SWN) Day
SWN: NF2), SWN: SMARCB1 (LZTR1), and SWN: Chromosome Ring 22

Like NF there is no Cure for any form of SWN
Research is needed.

05/17/2026

NF Month
May 17th is NF Day

NF Month: Neurofibromatosis Day May 17th

Neurofibromatosis (NF), initially called Von Recklinghausen disease, is not one but four separate genetic conditions that all result in tumor growth and Neurological issues. The four diseases are Neurofibromatosis (NF or NF1), Schwannomatosis: NF2 or SWN (NF2), & SWN: SMARCB1 (LZTR1), and SWN: Chromosome Ring 22.

As of February 2025, Neurofibromatosis is known as either NF, or NF1, and NF2 is no longer a form of Neurofibromatosis but is a form of Schwannomatosis known as SWN:NF2.

The history of NF is complicated, and the development of genetic testing was needed for researchers to realize that there are, in fact, three forms. However, this fact is not even commonly known among all doctors today, since NF is rare and, in some cases, not even identified. The results are a common issue of inaccurate Diagnosis of the wrong NF form and individuals not receiving the proper testing for needed treatments.

'NF Network' with the Senate and House of Representatives Committee on Appropriations has released the final negotiated agreement for the Fiscal Year 2026 Defense spending bill for funding for the Neurofibromatosis Research Program (NFRP) through the Congressionally Directed Medical Research Program (CDMRP). This bicameral, bipartisan agreement represents a major victory for the NF community. - Two individuals with NF and SWN go each year. As of January 2026, the 'Children's Tumor Foundation' did it as well, and NF2 Information and Services supports both.

NF2 Information and Services, Inc. "Science Timeline" https://www.nf2is.org/timeline.php

CTF. Children's Tumor Foundation. "Your Voice Was Heard: $25 Million for NF Research Proposed in Fiscal Year 2026 Defense Conference Agreement."
https://www.ctf.org/news/25-million-for-nf-research-proposed/

NF Network “FY23 CDMRP Funding Overview: Neurofibromatosis Research Program” https://www.nfnetwork.org/pages-news/fy23-cdmrp-funding-overview-neurofibromatosis-research-program/?lang=en

05/17/2026

May is Neurofibromatosis Month
May 22 is Schwannomatosis (SWN) Day
SWN: NF2), SWN: SMARCB1 (LZTR1), and SWN: Chromosome Ring 22

Like NF there is no Cure for any form of SWN
Research is needed.

05/17/2026

May: NF Month

May 17th: ( / ) Day
May 22nd: ( ) Day

05/17/2026

NF Month: Neurofibromatosis Day May 17th

Neurofibromatosis (NF), initially called Von Recklinghausen disease, is not one but four separate genetic conditions that all result in tumor growth and Neurological issues. The four diseases are Neurofibromatosis (NF or NF1), Schwannomatosis: NF2 or SWN (NF2), & SWN: SMARCB1 (LZTR1), and SWN: Chromosome Ring 22.

As of February 2025, Neurofibromatosis is known as either NF, or NF1, and NF2 is no longer a form of Neurofibromatosis but is a form of Schwannomatosis known as SWN:NF2.

The history of NF is complicated, and the development of genetic testing was needed for researchers to realize that there are, in fact, three forms. However, this fact is not even commonly known among all doctors today, since NF is rare and, in some cases, not even identified. The results are a common issue of inaccurate Diagnosis of the wrong NF form and individuals not receiving the proper testing for needed treatments.

'NF Network' with the Senate and House of Representatives Committee on Appropriations has released the final negotiated agreement for the Fiscal Year 2026 Defense spending bill for funding for the Neurofibromatosis Research Program (NFRP) through the Congressionally Directed Medical Research Program (CDMRP). This bicameral, bipartisan agreement represents a major victory for the NF community. - Two individuals with NF and SWN go each year. As of January 2026, the 'Children's Tumor Foundation' did it as well, and NF2 Information and Services supports both.

NF2 Information and Services, Inc. "Science Timeline" https://www.nf2is.org/timeline.php

CTF. Children's Tumor Foundation. "Your Voice Was Heard: $25 Million for NF Research Proposed in Fiscal Year 2026 Defense Conference Agreement."
https://www.ctf.org/news/25-million-for-nf-research-proposed/

NF Network “FY23 CDMRP Funding Overview: Neurofibromatosis Research Program” https://www.nfnetwork.org/pages-news/fy23-cdmrp-funding-overview-neurofibromatosis-research-program/?lang=en

05/15/2026

NF Month
: NF2



Hearing loss from : is , hearing loss caused by damage to either the , or the Nerve from the ear to the brain (the Nerve)

'Many patients with Schwannomatosis:NF2 suffer from , and associated Nerve compromise in NF2 patients makes ( ) an attractive treatment option. The long-term outcomes and benefits of the device are still being explored.'(1)

More recently, due to tumor growth delays Cochlear Implantation's (CI)s are being implanted in more individuals with NF2;
but CIs has been considered even for patients with Sporadic tumors with normal contralateral hearing.(2)

Hearing Loss (SNHL) is; a permanent type of caused by damage to the inner ear's tiny hair cells ( ) or the nerve pathways leading to the brain.

Sources:
de Cos, Víctor, et al. "Audiometric Outcomes of Auditory Brainstem Implantation during Vestibular Schwannoma Resection in NF2 Patients." Journal of Neurological Surgery Part B: Skull Base 86.01 (02/25): 006-012.
https://www.thieme-connect.com/products/ejournals/abstract/10.1055/a-2236-0113

Washington University in St. Louis"Auditory Brainstem Implants" (20/26)
https://oto.wustl.edu/patient-care/ear-hearing/auditory-brainstem-implants/