My beloved son, Leo. My most important quest.

This is one of my favourite photographs of my son. Sydney Harbour, sunshine and Leo smiling back at the camera. I love it.

Leo has FOXP1 syndrome. He has many challenges, and I have been determined to show him beautiful places and give him experiences we can share. His first swim was at Raffles in Singapore. This trip took us to Sydney and back to Jervis Bay, where I had lived as a child. He is my beloved son, and he gives me the energy to keep going.

In 2025, after a sixteen-year search for answers, we finally had a name for Leo's condition: FOXP1 syndrome. Having a name gave me somewhere to direct the questions I had been carrying for so long.

I began reading the research, contacting people and asking what we could learn. I became the Japan Ambassador for the International FOXP1 Foundation. After twenty years in Japan, I wanted to help families there connect with the wider FOXP1 community and with information they could understand and use.

In October 2025, I travelled to Boston for the American Society of Human Genetics meeting, with support from the International FOXP1 Foundation, Ultragenyx and the EveryLife Foundation. Before going, I researched more than eighty Japanese participants so I could understand whom it would be useful to meet.

In Boston, I met researchers including Dr Nobuhiko Okamoto and Professor Naomichi Matsumoto. In New York, I met Professor Joseph Buxbaum at Mount Sinai. I went with questions about Leo and a wish to connect the work being done in different countries.

The follow-through mattered. I helped bring people together for a research meeting in Japan and started a Japanese-speaking FOXP1 family group.

A useful talk or research paper can be hard to find when it is one item among hundreds. I have put together an independent guide to the Foundation's recorded talks and read across the research so families can see what is there and where to look next.

I write as a parent and researcher. My summaries are a way into the source material; questions about an individual child's care belong with their clinical team.

If you are a family in Japan looking for the FOXP1 community, or a researcher with work that could help families understand the condition, I would be glad to hear from you.

The Foundation is the place to find its official resources, research information and ambassador network. This page is my own account of why I am involved and what I am trying to do.