Hello and welcome to the website of Menkes Australia.
We established Menkes Australia and this website to:
- promote awareness of Menkes disease, its symptoms and systems for its early detection;
- advocate for access to treatment and support services, including copper histidine treatment, for all children with Menkes disease; and
- provide support, information and advice to families affected by Menkes disease.
We hope that this website can act as a meeting point for Menkes families, a rallying point for those seeking greater access to services for Menkes boys and a dynamic share-point for information on Menkes research and treatments.
In fact, a recent article published in Nature Reviews Neurology (link) provides amazing hope that a treatment allowing near-normal life for all those boys diagnosed with Menkes shortly after birth may be developed in coming years. Advances in newborn screening processes are similarly very promising.
We see this current website as a small start of what we hope will grow into a multi-faceted resource for Australians and people around the world that are touched by Menkes disease. Please feel free to contact us with your comments, questions and content ideas. We would love to hear from you.
Jeremy, Tamara, Georgia, Niamh, Miles, Elspeth and Beatrix
Menkes Australia founders and the proud family of a very special Menkes boy