Family Program Report

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Jackie James President of ISMRD reports on the meeting and the benefits to families who attended

For me, this conference was one of the most exciting meetings we had the pleasure to set into motion. Although we had held several very successful conferences in the U.S.A., we were very excited to hold our very first ISMRD conference in Europe!

Rome is a beautiful city, full of history and culture. Our hotel, The A.Roma lifestyle hotel was

perfect as our venue as it was completely accessible to wheelchairs. They were able to provide us with thirteen rooms that not only had a regular bathroom, but a handicap accessible bathroom at the same time. They were also able to offer us more than adequate conference facilities and their helpfulness and great pleasure of hosting us was more than appreciated. This also marked a first for us as we used an event provider. Symposia, which is based in the heart of Rome were an agency that we not only relied on to provide us with just about every part of getting this meeting set up, but followed through and worked alongside us at the conference. Patrizia Pasolini, Federico and team were beyond professional and were truly a tremendous asset to ISMRD.

We were very excited to meet several families for the very first time, and see some families that we had not seen in some time. Most of the families that attended were from Europe, although we did also have families from the USA, Australia, New Zealand, and Saudi Arabia as well. We also had many faces of the scientific field that we have known over the years attend, but again it was exciting to meet new faces too!

If I were to be asked what I took from the conference to be the most meaningful, I would have to say that there was more than one. Many of the new families that attended were overwhelmed. They had been given a dire diagnosis and told to live their lives as best as they could but there was no hope. These families were scared of what the future held, and obviously having to face the fact that they would see their children suffer and most likely die in their lifetime. This conference to them was a lifeline. I can very much relate to how they were feeling as I felt much the same back in 2004 when I attended the very first ISMRD conference.

It completely amazed me that within the last two years, so much has happened in the research field for the diseases ISMRD covers, along with many other storage diseases. For the first time there is actually hope to give these families. ERT is now possible for Alpha Mannosidosis, and AGU. Gene therapy research is underway for Mucolipidosis as well as some progressive research being conducted in regard to bone pain.

Even though some of the scientific conversations were difficult to always understand, it was evident that the research world is moving fast in order to help these very rare disorders, which is so very encouraging to me – and to each and every family.

I would say, one of the most meaningful moments was when some of the families got up to share their stories with the scientific community. . Many times there wasn’t a dry eye in the house. Bringing the families together with the scientific community was so very encouraging and meant so much to all who attended.

Together we encouraged, supported, learned, cried, laughed and came away with a sense of purpose and hope. I am very much looking forward to our next conference in Atlanta, GA in 2019. I believe it will be just as amazing and exciting to see how the research is progressing and to spend more time with our ISMRD family.