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My dream is that in the near future I can tell families about a cure for Rett Syndrome

Speechless for Rett Syndrome would like to introduce you to
Dr Carolyn Ellaway.

Dr Ellaway has been working with Rett Syndrome for over 20 years, and is passionate in striving for improvements in both treatment and towards a cure.

What brought you to working with Rett Syndrome?

I first started seeing girls with Rett syndrome as a paediatric trainee in 1997 when I was invited to participate and then coordinate a clinical trial of a medication called carnitine. This clinical trial led to further clinical and laboratory research projects, several publications and eventually I was awarded a PhD from the University of Sydney.

In 2000 as a way of giving back to the Rett syndrome community, together with my PhD supervisor and mentor Prof John Christodoulou we set up Australia’s first multidisciplinary management clinic dedicated to girls with Rett syndrome. This clinic has a team of medical and allied health professionals passionate about caring for girls with Rett syndrome and continues to be held monthly at the Children’s Hospital at Westmead.

What has impressed you most about the Rett Syndrome community in Australia?

The Australian Rett syndrome community is a wonderful supportive group of people connected by the love of a person with Rett syndrome, the desire to improve the quality of life of a person with Rett syndrome and the hope that one day there will be a cure for Rett syndrome.

What would having a cure for Rett mean ?

My dream is that in the near future rather than tell families there is no specific treatment for Rett syndrome, I can tell them we do have specific treatments and even a cure for Rett syndrome! When we do have a cure for classical Rett syndrome, we would also have the potential to cure atypical Rett syndrome and other neuro developmental disorders such as CDKL5 encephalopathy, MECP2 duplication syndrome, Angelman syndrome and many others.

Is there something that you are currently working on that you are particularly excited about?

I am excited to be the Principle investigator for the Anavex clinical trial. Participation in this trial will enable our team to attract further clinical trials to Australia. Also, our Rett clinic team is reviewing our experiences caring for girls with Rett syndrome over the last 20 years in NSW.

Do you have a message for the Rett Syndrome Community?

Yes! One day there will be a cure for Rett syndrome!

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