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February 10, 2007 Newsletter

Newsletter from Dr. Tomatsu



February 10, 2007


RE: Morquio A Project, Join the meeting!


Dear All Morquio Families and Friends,

We have had a great progress through this year in concert with all Morquio families, MPS Societies, international core medical doctors, Inotech Co, and PFC Pharma Co. and our lab colleagues (see pictures) on Morquio Project. We are now in the middle of finalizing natural history program in summer, 2007 and will conduct the clinical trial in early 2008. We also have five Morquio family meetings and fundraising parties at Bayville, New Jersey (March 3:, Tampa, FL (April 14:, SF, CA (June 2:,,, Seattle WA (July:, and Brunswick, Georgia (Nov:

We are very pleased to meet as many as Morquio families through the meeting. I am very happy to make a presentation of our Morquio Project to date and to discuss with each individual family. I enclosed the first three meeting brochures here.
Ask each host family for details. Please join the meeting!


Also we encourage to enroll your Morquio Child into the international Morquio registry or update the situation annually by using annual questionnaire on the web site of This Morquio Registry provides critical information to know the situation of each Morquio Child and such summary of registry information from all registered patients gives the precise natural history of Morquio A Disease. Comparison between the natural history data and post-treatment data provides a strong evidence of the effectiveness of the drug, supporting the approval of the drug.

Since the announcements on Morquio Project for the clinical trial have been e-mailed to the Morquio Community, physicians, and companies, we have already had a number of encouragements and offers of support from Morquio families and physicians. I really appreciate your participation and encouragement on Morquio Project. This is a real challenge for Morquio families, Foundations, MPS Societies, physicians, academic institute, and the pharmaceutical company to achieve the goal, development of the treatment for Morquio children. Although it may be still tough and some obstacles may come in the near future, I strongly believe that we can overcome it since we already continued this Morquio Project for the last 20 years in spite of many hardships and overcame many issues after all.


Please kindly join this Morquio Project with your courtesy and kindness. Even your little contribution on this Project is quite appreciated. Without working together, nothing will happen.


Thank you again for your understanding of Morquio A Project on behalf of Morquio Children and Families.

Looking forward to seeing you very soon!

Most Sincerely,

Shunji Tomatsu MD PhD
Associate Professor
Department of Pediatrics, Saint Louis University,
Pediatric Research Institute 3662 Park Ave. St. Louis MO 63110-2512
Phone: 314-577-5623 ext. 6213
Fax: 314-577-5398

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