NF2: Move It Move It

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$150

Raised

Donations

$15,000

Goal

Balance and muscle weakness are serious issues for people with the condition Neurofibromatosis Type 2 (NF2).


‘NF2 Information and Services’ is looking at options to help people take steps at home to recover by not just sharing what physical therapy types an individual might need, but options for things people can do safely on their own from home, or gathering with others to help if necessary.


NF2 health issues left untreated can result in unexpected problems, like delay in walking after equilibrium issues, and poor immune systems.  But, following different treatments like surgery, immediate recovery is necessary if an individual is considering a clinical trial, tumor-drug treatment all of which hinder any wound healing and chance of complete recovery from surgery.


Prolonged lack of recovery following doesn’t only leave an individual with muscle weakness and unable to walk but could hurt the heart as per the recommendations of movement needed daily by the American Heart Association, and risk circulation for memory.


 Possible reasons individuals with Neurofibromatosis Type 2 have issues walking and muscle weakness.

  1. Bilateral Vestibularopothy: Vestibular Nerve damage, tumor damage along Cranial Nerve 8 (CN8) Bilateral Vestibular Schwannoma (VS)/Acoustic Neuroma (AN)

  2. Spinal Cord Tumors.

  3. Leg Tumors.

  4. Severe Fatigue. Fatigue from tumor growth, tumor-drug trial treatments, medications, or other treatments  

  5. Frequent Seizure Incidents.

  6. Following a Stroke.

  7. Trauma Brain Injury. Pressure or trauma in an area that controls movement. 

  8. Atrophy: from extended periods of lack of movement, common issue during recovery of different treatments.  

  9. Peripheral Neuropathy/Nerve Degeneration.


Exercise Bands

Please help us raise money to give a few people with NF2 Fitbit bands to help improve their health.  Individuals would be allowed to pick band type and band color.

1. Fitbit Alta HR

2. Fitbit Charge 2


Both monitor movement, Blood Pressure, as well as vibrate notifications, and while the Charge 2 also allows for cell phone notification with a larger display, the phone notifications can be disruptive.

  • Sleep & Bedtime Reminders

  • Heart Rate

  • Reminders to Move

  • Tracking Exercise

  • How to Wear it

  • Changing Wristbands

  • Wear & Care Tips


You can also help people with NF2 free by helping with #NF2MoveItMoveIt.

Learn More at NF2 Information and Services: