Assistive Devices and Mobility Aids

Patients with GNE Myopathy experience physical disabilities that may affect their balance, walking, and use of hands. With proper assessment from a physical or an occupational therapist, some of these devices may be appropriate for each patient’s needs.

Patients may need canes, walkers, wheelchairs, scooters, and orthotic devices such as ankle-foot orthoses (AFOs) to assist with mobility. Our interactive Assistive Devices Presentation provides an evolving, patient-reported, and detailed description of items that are found to be helpful in day-to-day life with GNE Myopathy.

Let Patient Advocacy Program Manager Amy give you a quick introduction on how to use this interactive resource for adaptive devices.

This comprehensive presentation contains hundreds of vetted, assistive devices and gadgets to make life with neuromuscular disease easier.

Thank you to our global patient community members who have contributed to this presentation. If you would like to contribute ideas for consideration to be included in this presentation, please contact us.

Content provided on this presentation, including information that may be provided directly or by linking to a third-party website, is provided for informational purposes only and does not constitute an endorsement by NDF or its affiliates of any websites or specific products.

This patient resource presentation and download-able document do not provide medical advice. Please contact your medical professional with any specific questions you might have.

Patient-Recommended Assistive Devices

In our continued effort to provide support to our patient community, our Certified Patient Advocates have also created a comprehensive list of some suggested daily living aids/adaptive devices for GNE Myopathy patients. This collaborative document lists functional and practical aides that people across the GNE Myopathy community have found helpful for various areas of daily living including dressing, eating, hygiene needs, etc.

World Without GNE Myopathy (a patient advocacy group in India) has also compiled an additional list of assistive devices being used by patients.

GNE Myopathy Patient Blogs:

Read, in their own words, about the personal journeys of GNE Myopathy patients around the world.

  • Living With HIBM – Written by GNE Myopathy patient and psychiatrist Dr. Jennifer Yashari
  • Tara Talks GNE Myopathy – Recent news, research, and patient stories written by NDF Patient Advocacy Program Manager, Tara Voogel
  • Curb Free with Cory Lee – Travel journal written from a wheelchair user’s perspective by Cory Lee
  • Kam Redlawsk shares her thoughts on living with debilitating, degenerative conditions through art and writing.
  • Saskia Melches (in German) Saskia wants to move people, give them courage, pass on a more positive way of thinking, reduce fear of contact, and support people in mastering every situation in life.
Click here to learn directly from patients and family members stories about their personal GNE Myopathy journeys.

Other GNE Myopathy Organizations:

Other Relevant Organizations:

Other Resources

Diagnosed patients can e-mail us if interested in joining our registry

Video Resources

  • “Exploring Intimacy & Physical Connection for Neuromuscular Disease Patients and Their Partners”

  • “From Personal Trauma to Triumph: Lessons on overcoming emotional and physical limitations”

  • “The Role of Physical Therapy in the Functional Management of People with Neuromuscular Disease”

  • “Nutrition for an Optimized Life” “Nutrition for an Optimized Life”“Nutrition for an Optimized Lif Op

  • “Assistive Technologies for people living with GNE Myopathy” “Assistive Technologies f”

  • “Adaptive Devices to Increase Independence in Everyday Life with Neuromuscular Disease”

Snippets: Informative Excerpts from our webinars

  • Dr. Sepideh Tabibian: Emotions

  • Dr. Sepideh Tabibian: Mind/Spirit

  • Dr. Sepideh Tabibian: Movement

  • Dr. Sepideh Tabibian: Nutrition

  • Sogol Ash, MS: Nutritional Daily Tips

  • Sogol Ash, MS: Food & Brain Health

  • Sogol Ash, MS: Protein & Muscles

  • Sogol Ash, MS: Real Whole Foods

For more informational videos visit our Learning Library

Covid-19  Resources

red and white flower petals

We are here to support you. We have assembled a list of resources that we hope you will find helpful, educational, or entertaining.

COVID Resource Page