Morquio News #26 5/12/2009
Our Story
Welcome to The Carol Ann Foundation & International Morquio Organization Web site.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.
For more information regarding treatment on clinical trials, please go to www.BMRN.com or www.vivendy.ch
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. Along with Dr. Adriana Montano, Ph.D.
Assistant Professor both have been researching Morquio A for over 20 years and their lab is at
Saint Louis University
Doisy research Center
Department of Pediatrics
1100 South Grand Blvd.
St. Louis, Mo. 63104
Telephone #314 977-9292 Room # 307
Fax: 314 977-9105
E-mail: tomatsus@slu.edu or montana@slu.edu
They test patients to find out if they are positive for Morquio A free of charge.
The Carol Ann Foundation has a data base of over 400 patients. Together with Drs. Tomatsu and Montano 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. A succinct paragraph that will explain the purpose and outcome of each published article.
The next fund raiser will be The Mad Hatter Tea to Raise Funds for Morquio A Research is scheduled for Oct 4, 2009 3-5:30PM at The Windsor Room in Alexandria, VA. Hosted by the Bozarth family who have a daughter with Morquio who is 3 years old. For more information please contact: Stephanie or Austin at E-mail: stephbozarth@yahoo.com (703) 256-1980
Belle's Medical Journal: www.caringbridge.org/visit/belle
Bozarth Fundraiser/Event Website: www.morquio.org
The Little family hosted a fund raiser on May 2nd, 2009 in Tampa. They have an 8 year old son with Morquio A. They had a silent auction, golf, dinner and dance. It was a wonderfully fun and informative talk during the dinner with a lovely slide show of pictures of many Morquio families. With Dr. Tomatsu giving a talk helping the friends and family of the Little family who attended to grasp an understanding of what Morquio A is and how it affects their life. And of course how to help with research; funding ; why funding is needed; and where does that money go in their lab.
To learn more about Renee and John Little please contact:
Renee J. Little at The Jacob Randall Foundation
www.jacobrandallfoundation.com
E-mail: rjl197@verizon.net
cell-813-731-8274
fax-813-926-5904
Most Sincerely,
Mary Smith,
President and proud mom of Carol Ann age 16 with Morquio A.
The Carol Ann Foundation
MISSION STATEMENT
The Carol Ann Foundation is a 501c3 non-profit organization dedicated to seeking out people who have Morquio Type A 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.
