June 9, 2006

RE: Morquio A Project

Dear Colleagues and Friends,

We have had Morquio family meeting last weekend in New York hosted by Maria Hanako McClellan Family (May 27 and 28). We have enjoyed the meeting with many Morquio families and New York University Hospital and Dr. Mackenzie in Dupont Hospital in Delaware joined this program as well. Thank you again for all support. McClellan Family raised the fund of around $20,000 through the Maria?s 15th birthday party. Mary Smith will report the details of the fundraising party very soon.

We will have another family meeting in Venice, Italy after my chair session of 16.30-17.45 (Orthopedic and Skeletal Problem) on June 30 (Friday) (stay at the same room after the session, we will talk at the same room immediately) by taking advantage of International MPS Symposium (June 29- July 2; Venice Italy). We are very pleased to have many Morquio families coming to this meeting. I enclose the final program of Venice meeting.

We will update information on Morquio Project and collaboration!

We are sure we can work together for the goal. All information related to Morquio Project should be updated and posted at the web sites of the above active foundations and societies as well as other national MPS Societies.

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 www.morquio.com. 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.

Acknowledgements

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.

See you in Venice!!!
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
E-mail; tomatsus@slu.edu