MJD Foundation

The MJD Foundation received a referral for two clients with MJD through its website on 26th February 2009.

After making contact with relevant health service and other government provider personnel, Executive Officer Nadia Lindop and Director, Research & Community Services Libby Massey Morgan made a visit to Central Australia in October 2009 to scope the extent of the issue and meet with relevant persons.

The aim of the visit was to:
• Assess the probable spread of the disease by ascertaining family information where possible
• Determine available services and supports and make links with personnel and agencies.
• Facilitate referrals to appropriate genetic counselling services.
• Assess the immediate needs of the referred clients and meet those needs where possible.

It was a very productive trip, and we want to thank the following organisations and individuals for their time and assistance, and for making us feel so welcome.

- Central Australian Land Council (Alyson)
- Driver Web Design (Brad)
- Disablity Advocacy Service (Kim)
- NT DHF Aged & Disability team (Lesley and team)
- Macdonnell Shire Council (Graham Taylor and Barb Brennan)
- NT DHF Papunya Clinic (Danny and his staff)
- Papunya Government Business Manager (Mark Hutchins)
- Hermannsburg Clinic (Dr Peter Fitzpatrick)
- Nancy and Agnes at Papunya

This trip has enabled us to confirm that there are 2 confirmed cases of Machado Joseph Disease in Papunya and another 1 probable case in Hermannsburg.  Of this family, there are currently a further 12-20 individuals "at risk".

There are some immediate actions around equipment and housing advocacy that we are following up on, and Central Australia is now formally rolled into the locations covered by the MJD Foundation.