We strive to directly assist affected members and their families with valuable information, referrals to genetic counselling and other clinics, special equipment, emotional support and group support.

We are responsible for raising our own funds to assist our members with specialised equipment. For this we rely on the support and goodwill of donors.

Assistive devices that may be needed:

  • A motorised wheelchair is necessary when the person’s arms have become too weak to propel a wheelchair manually.
  • Special wheelchair cushions are needed to prevent pressure sores.
  • A bath board, bath chair, bath lift or shower chair helps when getting out of the bath becomes impossible.
  • A ventilator helps the person breathe when the diaphragm or muscles of the ribcage have become extremely weak.
  • An assistive coughing machine may be needed to facilitate coughing and clearing the lungs.