Our Achievements Thus Far.....

First newsletter published 1997, newsletters (now 28 pages in length and in colour) have been published quarterly since 1999.
In 2000, Kerri and Neill Carboon were successful in obtaining monies from the Australian Society for Inborn Errors of Metabolism (ASIEM), Nutricia and Micromass to attend the PKU and Allied Disorders International Conference held in America.

In 2000, with the support of the ASIEM and many, many members across Australia, the MDDA was successful in working with (then) Federal Health Minister, Dr. Michael Wooldridge, to develop a Federal Government scheme to asset affected individuals or families with the cost of low-protein foods. This assistance ($200 per month) is paid directly to the affected individual or their carer from the Department of Health and Aged Care.

Inaugural National conference held in Melbourne in 2001. MDDA received financial assistance from the ASIEM, Nutricia, Sharpe Laboratories and Family and Community Services (FACS) and other sources to help families across Australia attend this important conference. Neill and Kerri Carboon's report from the 2000 PKU & Allied Disorders conference was presented here, FACS supplied funds to have the conference video taped and copies of these tapes have been sent to clinics throughout Australia.

At the end of 2001, the MDDA received ongoing Federal Government National Secretariat funding to continue it's operations and specifically, to help expand it's membership Australia-wide.
Early 2002, the MDDA worked with the FACS Office of Disability to have a new "tick box" included in the application for Carer Allowance after automatic entitlement for parents of PKU children was removed in 1998. This inclusion has meant that many other parents of IEproteinM children qualify to receive Carer Allowance.

April 2002. With the support of the Metabolic Clinics at the Mater and Royal Children's Hospitals, as well as the Newborn Screening Laboratory, Brisbane - MDDA Vice President, Rachael Sharman met with local member Carolyn Male and State Health Minister, Wendy Edmond to outline the importance of MS/MS newborn screening. By June 2002, the Hon. Wendy Edmond approved funding to implement MS/MS newborn screening in Queensland. This new technology is expected to prevent the unnecessary death, disablement or severe illness of around 5 babies with inborn errors of metabolism each year in Queensland.
Throughout 2002, executive committee members held meetings across the Australia to talk to state bodies, groups, clinics, government departments and individuals to bring together those with metabolic disorders requiring dietary control. Forums were held in Brisbane, Cairns, Townsville, Mackay, Perth, Adelaide, Melbourne, Hobart and Sydney for everyone to meet and learn more about issues for those with IEM's. Many families met with another person with the same disorder for the very first time.

Vice President Rachael Sharman and husband, Rob Mackintosh received funds from the ASIEM and Nutricia to attend the PKU & Allied Disorders conference in Orlando, October 2002. Their reports on new treatments, therapies and research have been published via the MDDA quarterly newsletter.
The MDDA's second National Conference was held in Brisbane, September 2003. The conference was held in conjunction with the ASIEM's International Congress on Inborn Errors of Metabolism, and the MDDA successfully poached a number of International speakers widely regarded as world experts in the field of inborn errors of metabolism. Speakers were videotaped and summaries of their excellent talks will be published in up coming newsletters.

WHERE TO FROM HERE?
The MDDA will continue it's commitment to all Australians with IEM's in working with the Federal Government, with whom we already have strong, positive links. The MDDA also hopes to work with state groups, other organisations and government representatives to help educate the relevant departments or clinics about treatments or policies that differ state by state. Our primary focus, as always, will be to help educate and assist families in the improved management of these extremely complex conditions. The MDDA continues to expand it's knowledge and member base. We pride ourselves on being an extremely inclusive group and we welcome input, feedback and suggestions from all interested parties. If you have experiences and ideas to share, a skill, or just a commitment to hard work and enthusiasm, please don't hesitate to contact us to discuss your ideas and ways you can help. Just by joining the MDDA you can show your support. The MDDA has a majority membership and understanding of inborn errors of protein metabolism. We do hope to gain a better understanding of inborn errors of fat or carbohydrate metabolism.

For further information about the organisational structure of the MDDA and the COMMITTEE OF MANAGEMENT.

Written by Rachael Sharman, Vice President and Kerri Carboon, Executive Director.