Nemaline Myopathy Support Group

Resources

Retailers and suppliers

Communications & oral exercise

Disclaimer

Please email any recommendations or report broken links to davidmcd_@hotmail.com.
I personally do not have any financial connection with these companies.

  • Ace-Centre UK website for VoicePal Max.
  • DynaVox free download files available from UK retailer!
    Philip Bonvino uses a Dynavox 3100 with a micro light touch switch from Tash. They have a great line and a wide variety of switches.
  • Eye Responce Technologies is now part of DynaVox.
  • Prentke Romich Company Communication equipment.
  • Myo-munchie The myo-munchie is like a mouth guard. It is used to strengthen the muscles for eating and talking.

Software, smartphone, tablet apps.

Disclaimer

Please email any recommendations or report broken links to davidmcd_@hotmail.com.
I personally do not have any financial connection with these companies.

  • Emmett uses a free app on his iPhone called iSpeech TTS. He loves it! He even found a voice that fits his personality. It's available on the iPad too.

Toys & education

Disclaimer

Please email any recommendations or report broken links to davidmcd_@hotmail.com.
I personally do not have any financial connection with these companies.


Bikes, trikes, standers and therapy equipment

Disclaimer

Please email any recommendations or report broken links to davidmcd_@hotmail.com.
I personally do not have any financial connection with these companies.

Beds

Disclaimer

Please email any recommendations or report broken links to davidmcd_@hotmail.com.
I personally do not have any financial connection with these companies.

Car seats

Disclaimer

Please email any recommendations or report broken links to davidmcd_@hotmail.com.
I personally do not have any financial connection with these companies.

  • Mini Carro A car seat with good support.
    We used a Mini Carro which was recommended by the OT in the hospital and followed up by OT in Enable Ireland. However, we were dealing with a trachy and BiPAP at the time and found for front support was in the way of the tubing. There was also different supports which could be changed and/or removed.
    Ciara
  • JCM Seating A UK company

Specialised seating

Disclaimer

Please email any recommendations or report broken links to davidmcd_@hotmail.com.
I personally do not have any financial connection with these companies.


Body/spinal support

Disclaimer

Please email any recommendations or report broken links to davidmcd_@hotmail.com.
I personally do not have any financial connection with these companies.

  • Sure Step
    Today, our PT shared information on this SureStep TLSO which is available with breathing modifications, including anterior window and gill modification.

Wheelchairs

Disclaimer

Please email any recommendations or report broken links to davidmcd_@hotmail.com.
I personally do not have any financial connection with these companies.

Standing & walking aids

Disclaimer

Please email any recommendations or report broken links to davidmcd_@hotmail.com.
I personally do not have any financial connection with these companies.

Miscellaneous

Disclaimer

Please email any recommendations or report broken links to davidmcd_@hotmail.com.
I personally do not have any financial connection with these companies.

Vehicles & adaptions

Disclaimer

Please email any recommendations or report broken links to davidmcd_@hotmail.com.
I personally do not have any financial connection with these companies.

UK companies







































Plant a tree for NMSG

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Purchase a tree to dedicate to anyone with NM and help us raise funds for our next convention.

Planting a tree is a great way to mark an occasion or to remember a loved one. I am offering people the opportunity to plant a tree in celebration of a family member or friend with nemaline myopathy and at the same time raise funds for the Nemaline Myopathy Support Group.
Learn more »»