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While NF2 Information and Services - Recent News section shares new news articles a few times a week, there are older news topics that including basic explanations on different NF2 issues, some differences between NF1 and NF2 as well as other topics also worth looking at.

News: Page 1 | Page 2

  1. Brigatinib (Alunbrig™)

    Date: March 20, 2019

    Brigatinib (Alunbrig™) is a clinical trial tumor drug treatment listed for solid tumors. Early mouse trial studies suggest brigatinib may have good results with the reduction of size in solid tumors including; schwannoma and meningioma.

    Learn More: Brigatinib (Alunbrig)

  2. neurofibromatosis type 2 (NF2) tumors in pregnancy

    Date: December 18, 2018
    Akella, Sraavya S., et al. "Vestibular Schwannoma growth during pregnancy: case report of neurofibromatosis type 2 in pregnancy." (2018): 1.
  3. neurofibromatosis type 2 (NF2) tumors in pregnancy

    Date: December 18, 2018
    Akella, Sraavya S., et al. "Vestibular Schwannoma growth during pregnancy: case report of neurofibromatosis type 2 in pregnancy." (2018): 1.
  4. Revision of neurofibromatosis type 2 (NF2) Diagnostic Criteria

    Date: December 11, 2018

    Revision of the neurofibromatosis type 2 (NF2) diagnostic criteria:

    • Change glioma, to ependymoma.
    • Remove of neurofibroma.
    Evans, D. Gareth, et al. "Identifying the deficiencies of current diagnostic criteria for neurofibromatosis 2 using databases of 2777 individuals with molecular testing." Genetics in Medicine (2018): 1.
  5. Radiation Therapy in High-Grade Gliomas.

    Date: October 25, 2018
    Saran, Frank, Liam Welsh, and Delali Adjogatse. "Radiation Therapy in High-Grade Gliomas." Radiation Oncology (2018).
  6. Walking and the Brain

    Date: October 24, 2018
  7. Assessment of Expression of HER2 in Meningiomas

    Date: October 23, 2018

    "Among clinical challenges regarding human meningiomas is their propensity to recur even in cases with benign histology. Reliable biomarkers that can identify these cases are therefore highly desired. ErbB2/HER2 status is important in the medical management of patients with various human malignancies, whereas its clinical relevance in human meningiomas is ambiguous."

    Conclusion: "ErbB2/HER2 is generally upregulated in human meningiomas, but in an activated state only in a few cases. Only the activated receptor is associated with poorer prognosis, a link that needs further investigations."

  8. Drug Treatments and Schwannoma Vulnerabilities

    Date: October 23, 2018

    Hassle Free MRIs, includes a revolving disc that allows the magnet to provide alignment with the 3D MRI field.

    Individuals with neurofibromatosis type 2 (NF2) are maintaining cochlear nerve function longer. despite tumor growth due to better surgical options and tumor-drug treatments. Cochlear implants (CI) are hearing options after hearing amplification from hearing aids no longer work.

  9. Radiation Treatment: Laser Interstitial Thermal Therapy

    Date: October 23, 2018

    Hassle Free MRIs, includes a revolving disc that allows the magnet to provide alignment with the 3D MRI field.

    Individuals with neurofibromatosis type 2 (NF2) are maintaining cochlear nerve function longer. despite tumor growth due to better surgical options and tumor-drug treatments. Cochlear implants (CI) are hearing options after hearing amplification from hearing aids no longer work.

  10. Treatments - Spinal Cord Stimulation

    Date: October 23, 2018
  11. Hearing Implant: Cochlear Implant - Advanced Bionic - HiResTM Ultra 3D

    Date: October 05, 2018

    Hassle Free MRIs, includes a revolving disc that allows the magnet to provide alignment with the 3D MRI field.

    Individuals with neurofibromatosis type 2 (NF2) are maintaining cochlear nerve function longer. despite tumor growth due to better surgical options and tumor-drug treatments. Cochlear implants (CI) are hearing options after hearing amplification from hearing aids no longer work.

  12. Reasons for Tumor Growth

    Date: October 05, 2018

    Sometimes tumor growth can be the result of environmental factors.

  13. DOI (Digital Object Identifier) for Factual Information

    Date: August 07, 2018

    It is important when reading science information, like medical or food, clams as facts to look for a listed DIO number for either the paper, the article, or with the noted source. Including DOI's in citations is a new method to help allow people to read the initial source of information improve the value of the article content, actual links sometimes change, but DO for the research paper would not.

    Sources with DOI Numbers

    "A DOI (Digital Object Identifier) is a unique identifier that identifies digital objects. The object, itself, may change physical locations, but the DOI assigned to that object will never change. Journal publishers are assigning DOIs to electronic copies of individual articles in journals they publish. Because the DOI insures findability for the e-journal article, citation styles (APA, MLA, Chicago Manual of Style, Turabian, etc.) are starting to request the use of a DOI in a citation for e-journal content." [1]

    While study information may be contradictory to other study findings of the same topic, the argument would be with the people responsible for the person or people who had their material approved as a published paper, not the person who quoted the source.


    • Source: https://journal.com/10.123 | DOI: https://doi.org/10.123/journal.111111
    • DOI: https://doi.org/10.123/journal.111111
    • DOI: doi.org/10.123/journal.111111
    • DOI: doi.org/10.123/journal.111111


    Baylor University. "Find a DOI for Articles." https://www.baylor.edu/lib/electrres/index.php

  14. Ketogenic Diet: Tumors and Epilepsy

    Date: July 30, 2018 | Source: NF2 Information and Services | Lori Davila

    Possible advantages of health with the Ketogenic Diet aid in management of tumors and epilepsy. Article includes information to consider.

    Learn More:

  15. Kehrer-Sawatzki, Hildegard, et al. "Phenotypic and genotypic overlap between mosaic NF2 and schwannomatosis in patients with multiple non-intradermal schwannomas." Human Genetics (2018): 1-10.
    https://link.springer.com/article/10.1007%2Fs00439-018-1909-9 | DOI: doi.org/10.1007/s00439-018-1909-9
  16. President signs 'Right to Try' bill for Terminally Ill on 05/30/18

    Date: June 28, 2018 | Source: NF2 Information and Services | Lori Davila

    "Right to Try allows terminally ill Americans to try medicines that have passed Phase 1 of the FDA approval process and remain in clinical trials but are not yet on pharmacy shelves. 'Right to Try' expands access to potentially life-saving treatments years before patients would normally be able to access them."[3]

    "terminally ill patients to access investigational treatments that have passed basic safety testing (Phase I) with the FDA but are not yet available on pharmacy shelves."[3]


    Could this apply to people with Neurofibromatosis Type 2 (NF2) with inoperable tumors?


  17. Move It Move It

    Date: March 21, 2018 | Source: NF2 Information and Services

    Neurofibromatosis Type 2 (NF2) leaves many unable to walk well following tumor growth damage of the balance nerve (Vestibular Nerve).

    Health Improvement Tips:

    • If you have little energy during the day, additions of short walks each day can help improve energy and overall health.
    • One step after another. Repeat.
    • You need to walk before you can run.

    #NF2MoveItMoveIt #NF2NeverGiveUp

  18. Move It Move It: Vestibular Recovery Balance Tips

    Date: May 04, 2018 | Source: NF2 Information and Services
  19. Move It Move It: Balance and Muscle Weakness
  20. Move It Move It: Poor Balance (Disequilibrium) and Vestibular Rehabilitation Therapy
  21. Move It Move It: Brain Health: Memory
  22. Move It Move It: Heart
  23. Move It Move It: Donate to NF2: Move It Move It
    (Events, Exercise Bands, or Video)
  24. NF2 Information and Services Newsletter: Issue 1

    Date: March 21, 2018 | Source: NF2 Information and Services
  25. Human Brain Stops Producing Neurons After Childhood: Study

    Date: March 09, 2018 | Source: NF2 Information and Services

    The study findings suggest the end of brain neuron development at age thirteen (13), or age younger than eighteen (18).

    However; the findings were from only fifty-nine (59) brains, and the sources of the brains tested were from an age range from fetal to seventy-seven (77), where people had either 1) people who had died or 2) damaged brain matter surgically removed from patients with epilepsy.

    It is only fair to assume that the age is likely higher than the study conclusion, but the study confirms there is a reduction in development after thirteen (13). The paper itself noted another possible limit after a certain point might have been from equipment ability to show everything.

    Other sources of research suggest the brain changes and are completed in development at some point between age eighteen to twenty-five (18-25).

    Brain Treatment - Radiosurgery or Surgery

    Use of radiosurgery (CyberKnife, Gamma Knife, and Proton Therapy) for brain treatments like tumors, heats and damages some of the brain in the surrounding areas, lowest possible risk with proton therapy. This damage could stop of block necessary natural brain development especially in children.

    Each tumor and each individual's situation is different, but we should know the risks before making decisions about treatments.

    1. Charmagne, Nojas. Tech Times. "Human Brain Stops Producing Neurons After Childhood: Study" (March 8, 2018)
      Link: http://www.techtimes.com/articles/222625/20180308/human-brain-stops-producing-neurons-after-childhood-study.htm
    2. Shawn F. Sorrells, Mercedes F. Paredes, et al. nature International Journal of Science. "Human hippocampal neurogenesis drops sharply in children to undetectable levels in adults" (Published online: 07 March 2018)
      Link: https://www.nature.com/articles/nature25975 | DOI: 10.1038/nature25975
  26. Tumor Growth Risk: Not Sugar but Glucose

    Date Shared: January 30, 2018 | Author: Lori Davila | Source: NF2 Information and Services

    While what may be safe or dangerous for tumor condition varies, researchers have proven in different studies a possible risk of tumor proliferation from glucose. Many non-research sources took this information to mean white sugar and could be the reason individuals with higher BMI sometimes seen as having a higher tumor growth rate. But maintaining high glucose levels are not the only possible reason for a high BMI.

    People get glucose from bread, fruits, vegetables, and dairy products. Choice of foods is not the only reason for high glucose levels, alternate reasons are;

    • a heavy meal,
    • stress,
    • illnesses,
    • lack of physical activity.

    Individuals with tumors should consider moderation and prevention of high glucose levels in daily diets.

    Sources Note Commonalities:
    1. Alessia Lodi, Achinto Saha, Xiyuan Lu, Bo Wang, Enrique Sentandreu, Meghan Collins, Mikhail G. Kolonin, John DiGiovanni, Stefano Tiziani. "Combinatorial treatment with natural compounds in prostate cancer inhibits prostate tumor growth and leads to key modulations of cancer cell metabolism." NPJ Precision Oncology, 2017; 1 (1). Source: https://www.nature.com/articles/s41698-017-0024-z | DOI: 10.1038/s41698-017-0024-z
    2. Marin-Valencia, Isaac, et al. "Analysis of tumor metabolism reveals mitochondrial glucose oxidation in genetically diverse human glioblastomas in the mouse brain in vivo." Cell metabolism 15.6 (2012): 827-837. Source: https://www.ncbi.nlm.nih.gov/pubmed/22682223 | DOI: dx.doi.org/10.1016/j.cmet.2012.05.001
    3. Wilk, Anna, et al. "Insulin-like growth factor-I-forkhead box O transcription factor 3a counteracts high glucose/tumor necrosis factor-a-mediated neuronal damage: Implications for human immunodeficiency virus encephalitis." Journal of Neuroscience Research 89.2 (2011): 183-198. Source: http://onlinelibrary.wiley.com/doi/10.1002/jnr.22542/full | DOI: 10.1002/jnr.22542
    4. Shweiki, Dorit, et al. "Induction of vascular endothelial growth factor expression by hypoxia and by glucose deficiency in multicell spheroids: implications for tumor angiogenesis." Proceedings of the National Academy of Sciences 92.3 (1995): 768-772. Definition: Hypoxia: deficiency in the amount of oxygen reaching the tissues. | Source: https://www.ncbi.nlm.nih.gov/pubmed/7531342 | PubMed: 7531342
    5. Lang, CHARLES H., C. O. R. N. E. L. Dobrescu, and GREGORY J. Bagby. "Tumor necrosis factor impairs insulin action on peripheral glucose disposal and hepatic glucose output." Endocrinology 130.1 (1992): 43-52. Source: https://academic.oup.com/.../article-abstract/130/1/43/3034213 | DOI: doi.org/10.1210/endo.130.1.1727716
    6. Yun, Jihye, et al. "Glucose deprivation contributes to the development of KRAS pathway mutations in tumor cells." Science 325.5947 (2009): 1555-1559. Source: http://science.sciencemag.org/content/325/5947/1555 | DOI: 10.1126/science.1174229
    7. Schwartzenberg-Bar-Yoseph, Fabiana, Michal Armoni, and Eddy Karnieli. "The tumor suppressor p53 down-regulates glucose transporters GLUT1 and GLUT4 gene expression." Cancer Research 64.7 (2004): 2627-2633. Source: http://cancerres.aacrjournals.org/content/64/7/2627.short | DOI: 10.1158/0008-5472.CAN-03-0846
    8. "Everything You Need to Know About Glucose." Healthline. Source: https://www.healthline.com/health/glucose#normal-levels
  27. Wound Healing: Devise / Pulsed Acoustic Cellular Expression (PACE) - Acoustic Shock Waves

    Date Shared: January 2, 2018

    Promotion of wound and nerve healing with anti-inflammatory effects. Method of direct wound healing to a specific region of the body.

    Source Quotes:

    "Its approval is specifically to help heal foot ulcers in diabetic patients, where damage to blood vessels and nerves can lead to reduced circulation, infection and sometimes amputation. The Dermapace mechanically stimulates the wound, which Sinewave says promotes healing."

    "real shock wave therapy demonstrated a significantly higher wound closer rate vs. their peers who received the fake treatment (44% vs 30%)."

    PACE is now approved for treatment of diabetic foot ulcers but has been in study and possible use following breast augmentation.


    Would it be possible for this to help recover deep wounds heal following brain surgeries, or instead potentially promote the growth of any remaining tumor cells?

    1. YouTube. "Sanuwave - Dermapace 3D Medical Device Animation." https://www.youtube.com/watch?time_continue=9&v=arGgib9CpUI
    2. "The FDA just approved the first-ever shock wave device to promote healing." http://bgr.com/2018/01/01/shock-wave-therapy-sanuwave-dermapace/
    3. PubMed. Aesthetic Plastic Surgery "Pulsed acoustic cellular expression (PACE) reduces capsule formation around silicone implants." https://www.ncbi.nlm.nih.gov/pubmed/24337950 | DOI:10.1007/s00266-013-0235-9
  28. Donations to 'NF2: While we Wait.'

    Date Shared: December 1, 2017 | Source: NF2 Information and Services. | Donorbox.

    Neurofibromatosis Type 2 (NF2) results in slow growth of tumors and other health problems that starts at birth, even if not seen until teen years or much later in life. There is no cure for the genetic condition NF2, and unfortunately, all tumor-drug treatments in clinical trials have a maximum potential for tumor size reduction less than 20%. The simple truth is until gene therapy, immunotherapy, and stem cell research is ready money donated to cures is simply donations to delays of tumors.

    'NF2 Information and Services Inc.' is looking for donations to help share information on options that can help while we wait for research in the new fields to develop. No cure does not mean people with NF2 have no options now.

    Donations needed for growth to help:

    • website costs
    • graphics tools for better descriptive images
    • reach more people with NF2 and doctors
    • online live videos with NF2 specialists with CART for live captioned videos
    • basic cost-of-operations

    If the charity NF2 Information and Services or information included on the affiliated website of www.nf2is.org has helped you in some way, please consider donating and sharing the link.

  29. Research: Schwannoma Surgery - Decompression and CAP

    Date Shared: November 21, 2017 | Source: Free radical biology & medicine.

    A new concept in research during surgery for the care of Schwannoma tumors, decompression to remove as much of the mass as possible and use of CAP (cold atmospheric pressure) to kill the remaining tumor cells.

    The goal of CAP use during Schwannoma surgery is to minimize the amount of possible nerve damage done during surgery to allow for better complete recovery. More research is needed.

    While the research was specifically for Vestibular Schwannoma (VS), it should apply for any Schwannoma.


    Yoon, Y. J., et al. "Anti-tumor effects of cold atmospheric pressure plasma on vestibular schwannoma demonstrate its feasibility as an intra-operative adjuvant treatment." Free radical biology & medicine. (2017).
    Source Link: https://www.ncbi.nlm.nih.gov/pubmed/29138018 | DOI: 10.1016/j.freeradbiomed.2017.11.011.

  30. Are you sure your First Generation/Spontaneous NF2?

    Date Shared: November 19, 2017 | Source: NF2 Information and Services.

    NF2 is a genetic Autosomal Dominant condition.

    One of the more frightening problems an individual with NF2 might face is not knowing if they are Spontaneous NF2 (first generation) or Hereditary/Germline NF2 (second generation or after).

    It is said that individuals who are the first generation with NF2 are typically mild, but when an individual is Spontaneous:

    • Genetic tests from bloodwork often show no signs of NF2.
    • The individual may have; 1) little in tumor development, 2) late in life tumor growth, or 3) no development of tumors.
    • The individual may develop NF2 health issues unrelated to brain tumors like peripheral neuropathy, and doctors may assume it is related to something other than NF2, since peripheral neuropathy, particularly muscle wasting, develops as a result of several other conditions.
    Learn More...

    NF2 Information and Services. "Genetics." https://www.nf2is.org/genetics.php

  31. Muscle Wasting

    Date Shared: November 19, 2017 | Source: Healthline.

    Since NF2 is a rare condition, it is not surprising the link is missing NF2 as a reason for Muscle Wasting. https://www.healthline.com/symptom/muscle-wasting

  32. Peripheral Neuropathy (PN)

    Date Shared: November 17, 2017 | Source: Berkeley Wellness.

    If you know you have early signs of Peripheral Neuropathy (PN); you may want to take immediate action on suggestions included. Signs of Peripheral Neuropathy (PN) are explained in the link.

  33. Possible MRI Imaging Option - MRI without Contrast

    Date Shared: November 17, 2017 | Source: iMedPub Journals.

    "Results suggest that multi-slice EPI-based pCASL may be an alternative to Dynamic Susceptibility Contrast imaging (DSC) with Gadolinium (GD) in cases where no contrast agent can be injected."

    "CASL provides two advantages: absence of the injection of a contrast agent and reduction of susceptibility artifacts. The absence of an injection of a #contrast agent allows increasing the frequency of controls in patients with renal failure or at high risk of rapid tumor recurrence. Reduction of susceptibility artifacts contributes to good quality exams of some tumors near the skull base. Our data show regional differences between DSC perfusion maps and pCASL in some patients. At least in some cases, this mismatch can be explained by the relatively short post-label delay used for pCASL in our study. However, more cases would be needed to investigate these effects in more detail."

    The method to view MRI tumor scans without contrast seems complex due limited imaging, the need for considerable analysis past the scan, it may be more complicated than the average MRI facility may be able to perform; thereby possibly unrealistic. More research is needed.

  34. Cancer (Tumor Conditions) and Anemia

    Date Shared: November 16, 2017 | Source: American Cancer Society.

    Some serious symptoms of anemia are:

    • Shortness of Breath
    • Chest Pain
    • Fast Heartbeat
    • Swelling in your Legs
    • Feeling Dizzy or Lightheaded
    • Having trouble Breathing when you exert yourself; Walking, Climbing Stairs, or even Talking
    • Dizziness
    • Swelling in the Hands and/or Feet
    • Pale Skin, Nail Beds, Mouth, and Gums
    • Extreme Tiredness (Fatigue)

    If you have any of these symptoms, tell your doctor right away.

  35. MRI Contrast - Educate Yourself About Gadolinium

    Date Shared: November 3, 2017 | Source: Medinsight | PubMed.

    When given the options of a long MRI or two shorter MRI's, consider the risks of Gadolinium (Gd) before making a decision.

    Gd "...including inflammation, oxidative stress, neurological damage, and damage to our genes, or DNA. The damage to cells from gadolinium is exacerbated by exposure to the magnetic fields of MRI scanners."

    "...Gadolinium has been found to be retained in many tissues including bone and skin, but it also crosses the blood-brain barrier (BBB) where it ACCUMULATES IN HIGHLY SENSITIVE BRAIN TISSUE."

    "Gadolinium has been found to be retained in bone, skin, and organs, but it also crosses the blood-brain barrier (BBB) where it accumulates in highly sensitive brain tissue. Gadolinium is also toxic to the kidneys, liver, brain, white blood cells, and damages DNA."

    Accumulation: GD does not completely dissolve and leave the body after the injection. Therefore more likely a possible issue with each injection.

  36. NF2 Genetics

    Date Shared: October 31, 2017 | Source: Genetics Home Reference. U.S. Department of Health & Human Services.

    More than 400 mutations in the NF2 gene have been identified in people with the condition Neurofibromatosis Type 2.[Genetics Home Reference, NF2 gene - neurofibromin 2]
    NF2 Cytogenetic Location: 22q12.2


    Genetics Home Reference. U.S. Department of Health & Human Services. "NF2 gene - neurofibromin 2" (Reviewed: January 2017, Published: July 18, 2017) https://ghr.nlm.nih.gov/gene/NF2#conditions

  37. Surgery Practice with 3d Printed Duplicates of the Human Body

    Date Shared: October 31, 2017 | Source: The Associated Press. | Maker Shed.

    Today many skilled surgeons can use 3d printed models to learn, practice, and refine surgical techniques. 3d printed models and are used in medical schools for students to have almost real-life practice before use of tools in the human body.

    MRI scans also offer surgeons the possibility to duplicate an individual's; veins, brains and any other part of the body to test the surgery with 3d printed pieces before surgery on the individual.

    • Is your surgeon one of these doctors?
    • When did your surgeon complete medical education?
    • Is there such a thing as completion of medical education with the constant development of medical knowledge of the human body, medical techniques, medications, tools and other equipment?

    3d Printed Human Skull 3d Printed Human Brain 3d Printed Human Vertebrae
    1. Article Source: Pat Eaton-Robb. Seattle Times. The Associated Press. "UConn doctors using 3-D models to practice delicate surgery." (October 21, 2017)
    2. Photo Source: Davila, Lori. 3d Printed by Maker Shed. Maker Faire. "Brain." (September 2017)
    3. Photo Source: Davila, Lori. 3d Printed by Maker Shed. Maker Faire. "Skull." (September 2017)
    4. Photo Source: Davila, Lori. 3d Printed by Maker Shed. Maker Faire. "Vertebrae." (September 2017)
  38. Never Stop Learning - Neuroplasticity: Tips from a Neuroscientist

    Date Shared: October 24, 2017 | Video Date: December 15, 2015 | Source: TEDx Talks | YouTube | Speaker: Dr. Lara Boyd | Video Duration: 14.21min

    Dr. Boyd's discussion on the ability for the brain to continue to develop after childhood, even after brain trauma of strokes, also means brain trauma for other reasons. This should be seen as hope for individuals suffering brain tumor trauma. With practice and work, our mind and body may recover more function after brain trauma.

    "Dr. Boyd's efforts are leading to the development of novel, and more effective, therapeutics for individuals with brain damage, but they are also shedding light on broader applications. By learning new concepts, taking advantage of opportunities, and participating in new activities, you are physically changing who you are, and opening up a world of endless possibility."

  39. The Story Behind the Story in Lillian Duncan's Novel Puzzle House

    Date Shared: October 24, 2017 | Source: More To Life

    The Neurofibromatosis Type II (NF2) personal story of Lillian Duncan.

  40. Heart Disease - Increase in Dietary Potassium Can Help

    Date Shared: October 23, 2017 | Source: Science Daily

    If you either have a heart issue or are at risk of a heart issue for example if you are considering or taking a tumor-drug treatment, it is important a Potassium rich diet.

    Food high in Potassium includes Bananas and Avocados as well as; Sweet Potato, White Potato, Tomato Sauce, Watermelon, Spinach, Beets, Black beans, White beans, Salmon, Edamame, Butternut Squash, Swiss Chard, and Yogurt.

    Other medications can also increase risks of heart issues. Know the possible side effects of what you are taking. Talk to your doctor.

  41. World Sight Day (WSD): October 12, 2017 - Second Thursday in October

    Date Shared: October 12, 2017

    Most people who are either visually impaired or blind for avoidable reasons.

    Keep the vision you have, or correct vision issues while you can. Visit your eye doctor or Ophthalmologist for an eye exam.

    Not all Neurofibromatosis Type 2 (NF2) eye issues are the direct result of brain tumors, and poor vision from brain tumors may be corrected with immediate treatment before permanent blindness.

  42. Disability and Observance Awareness Months and Days

    Date Shared: October 8, 2017
    • January: National Birth Defects National Month, World Braille Day. (January 4)
    • February: Rare Disease Day at NIH (February 27)
    • March: Brain Injury Awareness Month and Developmental Disabilities Awareness Month.
    • April: Auditory Processing Awareness Month.
    • May: Better Speech and Hearing Month, Mental Health Awareness Month, Neurofibromatosis, Neurofibromatosis Type 1 (NF1) Day. (May 17), Neurofibromatosis Type 2 (NF2) and Schwannomatosis (SWN) Day (May 22)
    • June: Helen Keller Deaf-Blind Awareness Week. (June 24-30)
    • September: Hydrocephalus Awareness Month and National Spinal Cord Injury Month Awareness.
    • October: Blindness Awareness Month, World Sight Day (October 12) - second Thursday in October, National Disability Awareness Month, and National Physical Therapy Month.
    • November: Epilepsy Awareness Month. Epilepsy Foundation, Stress Awareness Day. (Nov 1) - first Wednesday of November.
    • December: International Day of Persons with Disabilities. (December 3)
  43. FDA Approves Amgen And Allergan's MVASI (bevacizumab-awwb) For The Treatment Of Five Types Of Cancer

    Date Shared: September 2017

    Approval Based on Totality of Evidence From Global Development Program Showing MVASI is Highly Similar to Avastin (bevacizumab)


    Biosimilar: A biosimilar is a biologic medical product which is almost an identical copy of an original product that is manufactured by a different company.

    Biosimilars are officially approved versions of original "innovator" products and can be manufactured when the original product's patent expires.

  44. Surgical Screws: Material Bone in Research

    Date Shared: September 29, 2017 | Source: ScienceDaily

    Until now medical screws have been metal screws, mainly made of Titanium or Stainless Steel.

    The switch to donor Bone Screw transplant instead over time join with existing bone and would be invisible in an x-ray after one year.

  45. Postural Control in Bilateral Vestibular Failure

    Date Shared: September 19, 2017 | Source: doi.org/10.3389/fneur.2017.00444

    Individuals "with Bilateral (left and right) Vestibular Failure (BVF) suffer from postural and gait unsteadiness with an increased risk of falls."

    A study was done to find the "role of otolith, semicircular canal (SSC), visual, proprioceptive, and cognitive influences on the postural stability of BVF patients." Posturography tests were done to monitor: target visibility; tonic head positions in the pitch plane; horizontal head shaking; sensory deprivation; dual task; and tandem stance.


    "Diagnosis of BVF patients is often missed possibly because postural control in BVF at baseline is indistinguishable from healthy controls (HC) once the visual and proprioceptive input is provided. BVF patients show a stronger visual dependency (increase in Romberg's ratio). The best postural predictor for BVF is the condition with standing on foam with the eyes closed. Accordingly, our data suggest that BVF should be tested with the eyes closed while standing on foam (mattress test). The strong dependency of postural control in BVF on proprioceptive and visual cues should be taken into consideration in vestibular rehabilitation."

    • Romberg's ratio: Repeating the same test to find a pattern.
    • Posturography: is a general term that covers all the techniques used to quantify postural control in upright stance in either static or dynamic conditions.
  46. MRI Imaging Options

    Date Shared: September 19, 2017 | Source: NeuroOncology | DOI: 10.21767/2572-0376.100018

    During MRI scans at mid-point a contrast agent, a Gadolinium-based substance is injected for clear imaging. Gadolinium has been found to result in different possible side effects with each use.

    While we wait for a new contrast agent that may prove to be safer for the body than Gadolinium, iMed Journals shared a paper that discusses alternate imaging options without contrast of alternate imaging options of multi-slice EPI-based pCASL when an individual can no longer have imaging scans with 'Dynamic Susceptibility Contrast imaging (DSC).

    The report includes imaging differences between the scan types and they agree more research is needed.

    Recommendation; review the report for imaging differences.

  47. Forehead Wrinkling - BOTOX® (Botulinum toxin)

    Date Shared: August 29, 2017 | Source: WebMD | MedlinePlus

    BOTOX® (OnabotulinumtoxinA) also known as Botulinum Toxin Type A is a Botulinum toxin produced by Clostridium Botulinum Bacteria.

    Issue: Wrinkled Forehead Only on the side of No Paralysis

    Facial Paralysis results in an inability to show expression on the side of the face an individual has Facial Paralysis. Talk to your doctor.

    "Very serious problems can happen if the botulinum toxin spreads from where it was injected. It may cause dangerous issues like; swallowing or breathing problems. These problems can happen hours to weeks after the injection and can cause death. The risk is greatest in children who are being treated for muscle spasticity in their necks. But adults who already have swallowing or breathing problems are also at risk for problems from a Botox injection." [WebMD, BOTOX]

    Other reasons for possible swallowing issue include tumor growth on the; lower branch of Trigeminal Nerve (Cranial Nerve 5 the Mandibular branch), or 2) Vagus Nerve (Cranial Nerve 10). A tumor on the Vagus Nerve could also result in breathing issues.

  48. Tinnitus has a Purpose

    Date Shared: August 28, 2017 | Source: University of Illinois at Urbana-Champaign. | ScienceDaily.

    "Tinnitus, a chronic ringing or buzzing in the ears, has eluded medical treatment and scientific understanding. A new study found that chronic tinnitus is associated with changes in certain networks in the brain, and furthermore, those changes cause the brain to stay more at attention and less at rest. The finding provides patients with validation of their experiences and hope for future treatment options."

  49. THC (Cannabis products) and increased incidents of Comas and Seizures

    Date Shared: August 16, 2017 | Source: CNN

    High doses of THC in Cannabis products have been found to cause either a coma or induce seizures in children. Questions we should ask:

    • Could high levels of THC in the developing brain mean brains with a form of brain trauma?
    • Could healthy adults also be at risk with higher doses?
    • What are the chances of comas and seizures in individuals with brain tumors?

    There have been cases of Comas and Seizures seen in Emergency Rooms. Accidental consumption of Cannabis products by children has occurred. The children were not aware or did not know what they are eating. This is the reason edible versions are now required to include suggested limits in the United States, in Colorado.

    If you are using Cannabis for medicinal reasons, you may want to talk to your doctor about using CBD Hemp Oil which includes only trace amounts of THC and is non-psychoactive.

  50. Keep Moving - Help Mind and Body

    Date Shared: August 16, 2017 | Source: ScienceDaily, Society for Neuroscience

    If you have NF2, even if you can't walk well, keep moving - It may help your Body and Memory.

    In mice, Research Developments suggest, yet again, running and other forms of exercise, while the brain is young or in development, can help with improved memory later in life; this could also mean the brain while in the expansion, or a developmental Neuroplasticity stage that typically slows down after childhood.

    Individuals with NF2 often have a high Neuroplasticity rate, which can allow brain development to extend into adulthood as a result of; adaption of the brain to tumor growth, loss of senses (hearing/vision). Loss of hearing results in need to learn lip reading (speech reading), the adaption of the brain to hearing implants, or sign language. Later in life education of a new language can alone result in brain development.

    It seems likely the exercise may help the Neuroplasticity chances for recovery from memory issues tumors in another part of the brain could cause.

  51. Healing Damaged Cells: Tissue Nanotransfection (TNT)

    Date Shared: August 8, 2017

    Researchers at The Ohio State University (OSU) Wexner Medical Center and Ohio State's College of Engineering have developed a new technology, Tissue Nanotransfection (TNT). TNT can heal with a single touch, and even repair brain injuries, repair injured tissue or restore the function of aging tissue, including organs, blood vessels, and nerve cells.

    It can generate any cell type of interest for treatment within the patient's own body. TNT "injects genetic code into skin cells, turning those skin cells into other types of cells required for treating diseased conditions."

    Would this new technology help or hurt a person with NF2 who have missing tumor suppressor function, by instead resulting in tumor cell growth instead of healing damage?

    OSU has already started planning human trials to understand this better before it will be publicly available.

  52. BXCL101 (Bortezomib™)

    Date Shared: August 4, 2017

    Follow-up on the Tumor Drug Trial: BXCL101 (Bortezomib™) by BioXcel Therapeutics, Millennium Pharmaceuticals mentioned the at the end of 2016, for believed potential treatment of Schwannoma and Meningioma.

    Things you may want to know, side effects and more: https://www.nf2is.org/bxcl101.php

  53. Balance (Vestibular) Rehabilitation

    Date Shared: August 4, 2017

    People with Neurofibromatosis Type 2 (NF2) tend to develop balance issues as a result of:

    1. Growth of Vestibular Schwannomas (VS) also known as Acoustic Neuroma (AN)
    2. Loss of function of Vestibular Nerves and Vestibular System on one or both sides of the head

    Different things can be done to recover and compensate for balance loss. VS tumors and Vestibular damage are not always the result of the condition NF2. Regardless of the reason of the damage, this damage always requires Vestibular Rehabilitation Therapy (VRT), since VS damage from NF2 makes less than five percent (5%) of the population who develop these tumors, proper physical therapy for this should be easily accessible. Talk to your doctor.

    "Current evidence is in support of VRT for treating patients with a variety of vestibular disorders, both central and peripheral. High-level evidence studies support the use of treatment techniques of adaptation and substitution for gaze stabilization, habituation, balance and gait training, and can with repositioning maneuvers. Recent evidence has also examined and found promising results with technological innovations that are targeted at those with bilateral vestibular hypofunction and insufficient gains with a standard exercise-based program. Nevertheless, factors such as anxiety overlay/depression, time when beginning therapy, and adherence may have an impact on how a patient will do with his/her VRT program and should be acknowledged." [Burzynski, 2017]

  54. Brain Tumour presenting as Toothache and Trigeminal Neuralgia - Damage of Trigeminal Nerve (CN5)

    Date Shared: August 2, 2017

    For individuals with a Schwannoma tumor, brain nerve tumor, there could be more tumor masses than you know of, especially individuals diagnosed with Neurofibromatosis Type 2 (NF2). Because of this, tooth pain may not be a tooth issue but a Schwannoma issue.

    Mention tumors as a possible reason for the pain to your dentist before having a root canal or removing teeth, neither of which will stop the pain if it is Schwannoma on lower portion of Cranial Nerve 5 (CN V), on the Mandibular Nerve branch of the Trigeminal Nerve. Removal of teeth because of CN5 damage has occurred more than once.

    This was a case share by a Dental Team of this with pain but the result of Trigeminal Neuralgia pain from Trigeminal Nerve damage in a recent patent visit.

  55. Minimally Invasive Microsurgical Resection of Primary, Intradural Spinal Tumors is Feasible and Safe: A Consecutive Series of 83 Patients

    Date Shared: August 2, 2017 | Sources: Neurosurgery | DOI: 10.1093/neuros/nyx253

    To date, the traditional approach to intraspinal tumors has been open Laminectomy or Laminoplasty, a surgical procedure that removes one or more portions of the vertebral bone, followed by microsurgical tumor resection. Recently, however, the report simply notes the use of Minimally Invasive Surgical (MIS) approaches attempted by some doctors with good results.

    Ninety-three percent (93%) of patients were ambulatory and able to work at the time of follow-up.

    Tumor masses removed included; forty-nine (49) Schwannomas, eighteen (18) Meningiomas, ten (10) Ependymomas, two (2) Hemangioblastomas, one (1) Neurofibroma, one (1) Paraganglioma, one (1) Epidermoid Cyst, and one (1) Hemangiopericytoma.

  56. New MRI contrast Iron Oxide Nanoparticles: Research at Animal Phase

    Date Shared: August 2, 2017 | Sources: Science Daily | Nature Biomedical Engineering

    During an MRI/MRA test to enhance what the scans show an injection of a Gadolinium-based agent is necessary. There are known possible side effects of these agents that could range from mild discomfort during and for a few hours after the injection, but with repeated injections over time can result in kidney problems including possible Renal Failure (Kidney Failure).

    In 2016, researchers confirmed a new contrast agent of Iron Oxide Nanoparticles could potentially replace the Gadolinium-based agents for MRI/MRA contrasts. Recently related information of trials with Iron Oxide Nanoparticles in animals including; rabbits, dogs, and macaque monkeys have so far proven it is as safer than Gadolinium.

    It has also shown it can distinguish differences from; air, hemorrhage (Strokes), calcification, metal deposition, and blood clots, some of which required CT Scans with ionizing radiation, a scan type that alone could result in tumor growth.

    Kidney problems are also a possible result of drug-tumor treatments, making this an important development for individuals with tumors.

  57. Why some clothes could pose a safety hazard during MRI exams

    Date Shared: July 31, 2017

    Due to the magnets used for the imaging, facilities clearly state no metal is allowed to be on an individual walking into the room of an MRI. Some fabric includes silver or metal fibers, which might be seen on clothing labeled as Anti-Microbial.

  58. Artificial light from digital devices lessens sleep quality

    Date Shared: July 31, 2017 Source: ScienceDaily | Ophthalmic and Physiological Optics.

    Melatonin skyrockets when blue light is blocked.

    Blue light emitted from digital devices could contribute to the high prevalence of reported sleep dysfunction, suggests new research.

  59. Scientists Have Used CRISPR to Edit a Human Embryo in The US For The First Time

    Date Shared: July 28, 2017 Source: Futerism.

    Researchers in Portland, Oregon have, for the first time, edited a human embryo in the US.

    This work adds to the promise of CRISPR (gene editing), and it stands as an important step toward the birth of the first genetically modified humans.

  60. Birth Control Pills and Tumor Drug Treatments

    Date Shared: July 27, 2017 Source: Lori Davila | NF2 Information and Services.

    It is uncommon for Tumor Drug Treatments (an example would be Avastin™) to result in Early-Menopause (Premature Ovarian Failure (POF)). When taken only up to six months which is the duration of use for Cancers, and why most of the treatments note POF as unlikely, whereas Neurofibromatosis (NF) duration of treatment may be years.

    The six-month drug treatments commonly result in delayed or extended cycle intervals, but when taken longer can result in POF. It is wise to consider freezing eggs and starting birth control before starting a Tumor Drug Treatment if there is a chance you need to stay on the treatment over six (6) months as is the case with individuals with Neurofibromatosis (NF).

    While there is an argument, birth control may result in tumor growth, when on a Tumor Drug Treatment it can help regulate the menstrual cycle to lower risk of POF. Tests to monitor health included in the source.

    Talk to your doctors.

  61. Cancer-Causing Contaminants Found in Water

    Date Shared: July 27, 2017 Source: Patch Media.

    How safe is the water in your state? - Link included for listing state to state.

    While water comes out of your sink or shower may look clean, a new report released Wednesday might suggest otherwise. A report from the Environmental Working Group (EWG) tracked 93 contaminants across the state's fresh water supply, and found 11 harmful contaminants in drinking water.

  62. NEI charts a Clearer Future for Cataract Prevention and Treatment - Section: Eye Drops Work for Dogs

    Date Shared: July 26, 2017 Source: National Institute of Health. National Eye Institute.

    Cataracts is an issue for the general population after the age of sixty-five (65), but somewhere between sixty percent to eighty percent (60% - 80%) of individuals with NF2 develop Juvenal Cataracts at or shortly after birth.

    "Dogs may have a topical treatment for cataracts soon. "We just completed a clinical trial and found an eighty-five percent (85%) reduction in cataract formation in diabetic dogs," said Peter F. Kador, Ph.D., an NEI-funded researcher at the University of Nebraska Medical Center. Diabetes is a risk factor for cataract in both dogs and humans. The drug he developed prevents cataract formation by stopping a metabolic reaction in lens epithelial and fiber cells. Kador believes the drug may work in humans."

    NEI points to a treatment named Kinostat®, but there appears to there may be more than one eye drop and possible non-surgical option for Cataracts. Talk to your doctor.

  63. Calls to Poison Centers about Supplements up 50%, between 2002 - 2012

    Date Shared: July 26, 2017 Source: Victoria Knight | CNN, Journal of Medical Toxicology, National Poison Data System
    Dietary Supplements; Vitamins, Minerals, Herbs, Botanicals, Homeopathic Agents and Amino Acids
    Symptoms; Tachycardia (rapid heart rate), Vomiting, Nausea, Irritability, Drowsiness, and Dizziness.

    "From 2000 to 2012, there were 274,998 dietary supplement exposures reported to poison control centers across the US: one call every 24 minutes, on average. " This is an increased rate of 50% from previous years.

    While source focus is a concern for children, under the age of six (6), which accidentally consumed dietary supplements of parents, adverse side effects were also a reported issue with older children and adults.

    Dr. Henry Spiller comments on his report, "Because Supplements are not medicines prescribed by the doctor, people think of them as natural, but they need to be treated as if they were medicine. Because the FDA does not regulate dietary supplements, there are no robust studies done to ensure that they are efficacious or have a reliable safety profile. We're often going down a path of unknowns, and for possibly no benefit at all. We don't know if there's a benefit to taking any of these supplements, because of the lack of studies. People need to be aware of that."

    "Just because it's a natural supplement doesn't mean it's safe," he said. "I often use the example, technically, that cocaine is also natural. But that doesn't mean it's safe."

  64. Subacute normobaric oxygen and hyperbaric oxygen therapy in drowning, reversal of brain volume loss: a case report.

    Date Shared: July 24, 2017 Source: Dr. Harch, Paul G. | Medical Gas Research

    A two (2) year old girl drowned, resulting in deep gray matter injury. One-hundred percent (100%) oxygen treatment, or hyperbaric oxygen treatment (HBOT).

    DOI: 10.4103/2045-9912.208521
  65. NF2 Ohio Gathering (OG) 2016 - Transcripts

    Date Shared: July 20, 2017 | Event Date: October 8, 2016 | Source: Phyllis Lee, NF2 Event

    The October 2016 NF2 Ohio Gathering Transcripts include important topics is available in full at https://www.nf2is.org/og2016-3sections.php. There are jump points to the three (3) sections for help finding sections given the length of the document.

  66. Novel cancer treatment wins endorsement of FDA advisers

    Date: July 13, 2017 | Source: The Washington Post

    As of Wednesday, July 12, the Food and Drug Administration (FDA) advisers have started to encourage a first-of-its-kind cancer treatment for B-cell Acute Lymphoblastic Leukemia with Immunotherapy. This immunotherapy treatment uses patients' immune cells to fight the disease if other treatments have failed or relapsed in children or young adults between the ages of three (3) to twenty-five (25).

    If cleared by the FDA, it would be the first gene therapy approved in the United States.

  67. New research offers hope to neuro-tumor patients - Overproduction of PrPC

    Date: July 10, 2017 | Source: EurekaAlert!

    Overproduction of PrPC in NF2-related tumors, Mesothelioma (usually linked to exposure to asbestos), Breast Cancer, Colorectal Carcinoma, Melanoma, Glioblastoma, Prostate Cancer, Gstric Cancer, and Spontaneous Schwannomas.

  68. ABI and American Med-El Trial in the United States

    Date Shared: June30, 2017 | Written: June 2016 | Source: University of Kansas

    American Approved Audtotry Brainstem Implants (ABI) and FDA approved brands.

  69. Fact: Seizures / Epilepsy and Driving Limits and Options

    Date Shared: June 27, 2017

    Epilepsy and driving is a personal and safety issue. A person with a seizure disorder that causes lapses in consciousness may be putting the public at risk from their operation of a motor vehicle. Laws have been enacted all over the world regarding driving for people with epilepsy.

    In every state in the United States, it is illegal to drive for an individual having seizures, and duration of last seizure incident may allow the ability to drive again, six months to two years depending on the state.

    However, town accessibility options of personal bus services, deductions of cost for; public bus, train or subways can help allow for accessibility options. Contact your local town hall for options and additional information.

    The same transportation options apply to individuals who are legally blind or deaf.

    Individuals with NF2 may only have issues with Epilepsy for a few two to five years.

  70. Opioid-Induced Hyperalgesia (OIH) - Painkillers sometimes make the pain worse

    Date Shared: June 27, 2017 | Source: American Association for the Advancement of Science (AAAS)

    You might want to tell your doctors you need alternative painkillers to Opiates, particularly if the already prescribed Opiates are not killing pain despite increases in dose.

    "At high doses, Opioid Painkillers actually seem to amplify pain by changing signaling in the central nervous system, making the body generally more sensitive to painful stimuli."

  71. Acupuncture Shown to Ease Pain in ER Patients

    Date Shared: June 22, 2017 | Source: PsychCentral

    A new study has found that the use of acupuncture in emergency departments is a safe and effective alternative to pain-relieving drugs for some patients.

  72. Gene Editing: Crispr-Cas9

    Date Shared: June 19, 2017 | Source: New York Times
  73. Sulforaphane reduces hepatic glucose production and improves glucose control in patients with type 2 diabetes

    Date Shared: June 18, 2017 | Source: Science. American Association for the Advancement of Science.

    Also read about NF2 and Sulforaphane for Vestibular Schwannoma (VS) / on NF2 Information and Services Drug-Trial listing.

  74. Cancer in the organ donor

    Date Shared: June 16, 2017 | Source: Dpt. of Abdominal Surgery & Transplantation

    "Tumors in the donor: what is the risk? Cancer can be transmiRed by organ transplantation"

    We need to ask what could this mean for people with NF who are considering listing themselves as organ or blood doners.

  75. New tool helps pick puppies most suited to guide dog training

    Date Shared: June 16, 2017

    Puppy Training Supervisor Questionnaire (PTSQ) is a new method to help successfully select puppies that would make good guide dogs.

  76. Pembrolizumab (Keytruda)

    Date Shared: June 15, 2017

    Additional sources and information about Pembrolizumab hera on NF2 Information and Services. Includes a list of conditions Pembrolizumab is in trial for.

  77. Pembrolizumab (Keytruda) a PD-1 blocker

    Date Shared: June 11, 2017 | Source: New York Times

    With the release of a new tumor drug treatment Pembrolizumab (Keytruda) quickly passed by the FDA for some Cancers; cancer of the pancreas, prostate, uterus, or bone and currently in trial for Neurofibromatosis Type 1.

    • Could this treatment potentially also help people with NF2 or other tumor conditions?
    • Is this a breakthrough in what could be a new line of tumor drug treatment possibilities for all other tumor conditions?
  78. Antibody Targeted Therapies in Meningiomas: A Critical Review

    Date Shared: June 9, 2017

    "Surgical resection being the most successful approach for meningomas is not always possible pertaining to its inapproachable locations of tumors. Radiation therapy is sometimes restricted by neurotoxicity and tumor size, while chemotherapy regimens have been minimally effective as treatment option in meningiomas. Therefore, treatment of the remaining subset of aggressive, unapproachable or refractory meningiomas remains challenging. This makes it a topic of concern to explore more strategies for its management."

    "Recent practices have shown increased interests in the utilization if monoclonal antibodies. Among the most prospective are TRAIL therapy followed by antibodies targeting receptors such as PDGFR, EDGF, VEGFR, PD-1. These therapies can be utilized to reduce the stability of meningiomas. There is a need for initiation of large scale Randomized controlled trials to improve outcomes in meningioma patients and formation of a more productive management strategy. "

  79. FDA seeks removal of opioid painkiller from the market

    Date Shared: June 9, 2017

    "The Food and Drug Administration on Thursday asked a drug company to remove its opioid pain medication from the market, the first time the agency has made such a request because of the public health consequences of abuse."

    "The agency concluded after an extensive review of Endo Pharmaceuticals' Opana ER that the "benefits of the drug may no longer outweigh its risks." The company reformulated the drug in 2012 to make it more difficult to snort, but the FDA said that move actually led to more injections - and a major HIV outbreak."

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