WELCOME TO OUR FAMILY!

We realize that if your child has been just diagnosed with mosaic Down syndrome, you have many questions and may be worried about what this means for you and your child's future. Or, perhaps you have known quite some time that your child has MDS and have just found your way to IMDSA. In this packet, we have included information pertaining to MDS and the aspects surrounding it. We hope that this information will help answer some of those questions you have right now.

International Mosaic Down Syndrome Association is nonprofit organization designed to provide support , information , and research to anyone touched by mosaic Down syndrome. IMDSA is run by families of individuals with mosaic Down syndrome. Each officer volunteers his or her time to IMDSA to help provide support, information, and research to those affected by MDS.

Support

We have found that the best way of support is through others who have lived what you are living. Families can help you put your feelings and concerns into perspective and can provide you with a wealth of information. You can meet with these families through our online support group http://health.groups.yahoo.com/group/MosaicDS/ and through our Family Connect program. Also, our biennial research & awareness conference will provide you with a variety of information and support from others throughout the world.

Information

In addition to this information packet, IMDSA can provide you with information in a variety of ways. First, we provide our electronic quarterly newsletter MOSAIC WORLD to our members. This newsletter is packed with up-to-date information concerning MDS. Second, IMDSA provides Ask the Expert teleconferences. This gives our members the opportunity to ask their questions directly to MDS experts. Third, we provide a comprehensive website where you can read the most up-to-date information regarding MDS. Finally, IMDSA has a toll free hotline where you can ask your questions directly.

Research

We at IMDSA realize the only way we will discover more about mosaic Down syndrome is through research. We work with several researchers and are consistently searching out more, so we can provide you with more information on this rare disorder. Through our website, newsletter, and mailings we can connect families and researchers together. Please visit our website often for updates on research activities in which you can be involved. During our biennial conference, IMDSA invites researchers to conduct their research on site. This allows researchers to observe many individuals with MDS and is most convenient for our families.

Please feel free to contact us with your questions or concerns. We are here to help!