IMDSA History

In 1999, MOSAIC DOWN SYNDROME ON THE WEB was designed by Bree Prive, a parent of a child with mosaic Down syndrome. Knowing that there was no information on MDS out there, Bree Prive took the initiative to make a website and online support group devoted to this rare form of Down syndrome. And, quite quickly, families and individuals touched by MDS from all over the world came to the site searching for information and support.

Within the year, families began talking with each other via internet, and started making plans to have a get together where all families touched by MDS could finally meet face to face. It was during this time that Kristy Colvin, a parent of a child with MDS, realized that an organization devoted to MDS was greatly needed. After speaking with other families it was agreed that a non-profit organization would be beneficial to provide support, information and research to families and professionals interested in mosaic Down syndrome.

In August 2001, a board of directors was elected through an online poll and formal meetings began to form the non-profit organization. All officers were parents of children with MDS. And, each studied to learn the aspects of non-profit organizations. IMDSA's bylaws and goals were established within this year. A contest was conducted for children with MDS to submit drawings for the IMDSA logo. 8 year old, Katie Green of England was the winner of that contest and her drawing was on all of IMDSA's correspondences, along with the art work of Ronald Elbrechter, IMDSA's computer specialist and printer until 2006.

In February 2002, International Mosaic Down Syndrome Association was registered in the state of Texas as a 501c(3) non-profit organization. During this year, IMDSA established its website with the help of Lisa Twomey, a parent of a child with MDS, to further provide support and information to those interested in MDS.

In June 2004, IMDSA had its first MDS Awareness conference at the Virginia Commonwealth University where ongoing MDS research is being conducted in Richmond, Virginia USA. It was then agreed that an annual conference would be beneficial.

Since the birth of International Mosaic Down Syndrome Association, hundreds of families, educators, and medical professionals have been in contact with the organization. IMDSA has been able to provide support and information through its online support group, website, quarterly newsletter “MOSAIC WORLD”, and research projects. It is IMDSA's goal that all persons of the medical, educational and general communities have knowledge on mosaic Down syndrome and that no family ever feel alone in raising their child with MDS.