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This year I had the pleasure of attending the 2nd International conference for ISMRD in Ann Arbor, Michigan.

When I decided to attend the conference, I was excited to be able to hear all the advancements in what had been happening on the International front with research and treatments for Mannosidosis and the related diseases. I then thought, how will I be with seeing all the affected children?

On arriving in Ann Arbor my discomfort quickly disappeared as we were welcomed by some of the other families attending the conference. Even though you had just met the people, you could feel a special common bond in what we all live with every day. One thing I found was that no matter what the children had and how it affected them they all seemed to have a glint in their eye and a smile that went with it.

On our long journey from New Zealand Jenny Noble and John Forman both told me that some of the conference would be well over my head, but I was pleasantly surprised by how a lot was explained in detail yet in plain English, and the effort put in by many of the researchers whose first language is not English.

During the conference I was blown away by the depth and dedication that had been put into finding treatments and sometimes cures for these rare diseases.

I found it heartening when talking with some of the Professional body during the breaks, their real interest in what was happening with our children or how they were doing after treatments that these people may have had a hand in developing.

I got to spend some time with Dag Malm who is a parent and doctor, and also Judith Blanz, John Hopwood, Jules Leroy, Annie Hale and Stephan Tiede.

Then I met great people like Dr Elizabeth Newfeld, who has spent the last 40 years studying Lysosomal Storage Diseases. What would we do without people like her?

The conference for me has been a great learning experience by being able to meet and talk with other families, the children and of course the doctors and other professionals.

I would love to attend the next conference, but this time have the rest of my family with me to share the experience.

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