Italy Conference on Lido Island June 28th, 2006

This was the 9th Annual MPS Society Scientific Symposium. While normally geared towards scientists and professionals it is open to families. It is a way for scientists to share information and learn what is new in the scientific community. The Conference had a good turn out with many families staying in the surrounding area which was within walking distance to the Conference center and to nearby restaurants and shopping.  It was very warm and humid with no rain or even clouds in sight. Luckily the Conference Center itself was well air conditioned!

The Italian MPS Society did a wonderful job or organization. By the time we arrived at the airport in Venice, there were volunteers to assist us with where to go by holding up large signs. They had someone to speak English for us and were very nice and pleasant.

The bus system on Lido Island was easy to use since it is such a small island that even if you missed your stop, no worries, it’ll go around the island again.  The beach was only 3 blocks from our hotel. We stayed at the La Meridian Hotel which included a delicious buffet breakfast. There were about 4 families with Morquio that stayed at this hotel and many others with different MPS disorders. So there was a nice comradely during morning coffee with everyone getting to know one another.

At the Conference Center there were sessions for families to attend as well as the scientific sessions for professionals.

All had headphones for translation free of charge to registered members of the MPS Society. There were many Pharmaceutical Companies represented including BioMarin, Genzyme, Inotech, Shire, and TKT.

One speaker whom I thought had a really interesting presentation was a Dr. Walker from England. He had put together a DVD video specifically explaining the risks of Anesthesia for all MPS patients. He worked with Genzyme Pharmaceutical Company, who funded the project to have this made available to all MPS families free of charge.

After I spoke with Dr. Walker about obtaining copies to distribute to the Morquio Community he explained that Genzyme would probably send me as many copies as I wanted and to talk with them directly, which I did, and they promised to send me as many as I needed as often as needed! So, once they arrive I will send them to everyone. It will certainly be a great tool to have to give to your child’s anesthesiologist before surgery. During such a difficult time it’s one less problem to worry about.

Of course our own Dr. Shunji Tomatsu did a handful of presentations, both for families as well as for professionals. The core team of medical doctors for clinical trials was also organized very well by Dr. Shunji Tomatsu and Inotech. The Carol Ann Foundation created new T-Shirts for the doctors team to wear so that we could memorialize the occasion with a photo opt!

From left to right are: Dr. Kurt Pfister, PhD, CEO (KP) from Switzerland; Christoph Heinzen CEO of Inotech -Switzerland; Prof Yasuyuki Susuki of Gifu University School of Medicine; Dr. Beck from Germany of Kinderklinik der Universitat Mainz; Dr. Tomatsu from Saint Louis University – Missouri; Dr. Joseph Muenzer MD.PHD of University of North Carolina At Chapel Hill; Dr. James (Ed) Wraith of Willink Biochemical Genetics Unit, Royal Manchester Children's Hospital; and Dr. Paul Harmatz, MD of Pediatric GI and Nutrition Associate Director Pediatric Clinical Research Center Children's Hospital Oakland, California.

We also had an opportunity to have dinner with a few Morquio families who attended.

Mary Smith, Christine & Fredi Wiesbauer, Maurizio Bellassai and Michaela Weigl

We were also lucky to have one of the dads speak fluent Italian which helped when it was time to order.  The food in Italy was very good and the people were all kind enough to know enough English to make communication just that much easier.

We also had special T-Shirts made up as a surprise for Dr. Tomatsu. On these we put a blown up photo of   Dr. Tomatus with the caption underneath “Our Hero” in deep purple in large block font. During Dr. Tomatsu’s presentation for the Morquio families is when we wore them and it took awhile for him to notice, in fact it was after he finished talking that he started looking more closely! He was very surprised and signed some of the T-Shirts in English as well as Japanese. It was truly a special event just to see the look on his face.

Sebastian Fidani, Maria Prahofer, Christoph Heinzen, Mary Smith, Maria McClellan and Sophia Wiesbauer

Michaela and Me

Genevieve Poulin from Quebec, Canada; Dr.T & Christoph Heinzen from Inotech

Maria Prahofer and Maria McClellan

Elena McGauran from Ireland and Dr.T

Veronica Colantoni from Italy and Dr.T

Daniela Marongiu –Secretary of the Italian MPS Society  and Dr.T

Barbara Berdini with Dr.T

Valentina Tortora and Dr.T

Giulia Fresi and Dr.T

Joanna Evans from Scotland and Dr.T. Joanna also gave a real nice speech on living with Morquio. She told of her life at University on and off campus.

Nicolas & Monika Fidani, with Dr.T

Antonio Armato with Dr.T