Morquio Symposium Newsletter
Much has been happening in the Morquio community lately. But before I get into that lets take a moment to help new patients and family members to understand what Morquio A is and the ramifications of having this disease.
Morquio A is a bone disease that affects all the bones. It is a progressive disease which simply means that over time the disease presents itself more as the patient grows. Thus symptoms gradually get worse.
Growth is stunted and generally patients will be in a wheelchair at an early age. Many of the deformities are handled by surgery throughout ones’ life. The quality of life for Patients is directly related to these surgeries.
We have been working with Dr. Tomatsu now for over 12 years now. Dr. Tomatsu, Ph.D Professor is our chief Medical Advisor at The Carol Ann Foundation as well as conducting research for the 2nd Generation of drug for the treatment of Morquio A.Shunji Tomatsu, MD, PhD Nemours Biomedical Research Principal Research Scientist, Orthopedics Director of the Skeletal Dysplasia Lab in the Center for Orthopedic Research and Development (CORD)
ARB 331 Alfred I. dupont Institute Hospital for Children
1600 Rockland Rd.,Wilmington, DE. 19899-0269
Cell: 314-691-0430, Office Tel: 314-691-0430
E-mail: firstname.lastname@example.org, email@example.com
The Carol Ann Foundation has a data base of over 400 patients. Together with Dr Tomatsu. We created a questionnaire for patients to complete which helps with understanding the disease and continuing their ongoing research. Together they have published over 25 articles on Morquio A. We are working on taking each article and have it be more easily readable for patients and families. And provide a succinct paragraph that will explain the purpose and outcome of each published article.
Most Sincerely, Mary Smith, President and proud mom of Carol Ann age 19 with Morquio A. The Carol Ann Foundation
The Carol Ann Foundation is a 501c3 non-profit organization dedicated to seeking out people who have Morquio in order to provide a mutual aid network; act as a advocate between patients, physicians and scientists; compile medical information into a database; and pursue funding for education, families and research.