MOSAIC MOMENTS

Before International Mosaic Down Syndrome Association became an organization back in 2001, the only information readily available for parents of children with mosaic Down syndrome was this short paragraph.

A small percentage of people with Down syndrome have an extra copy of chromosome 21 in only some of the body’s cells. In these people, the condition is called mosaic Down syndrome. Mosaic Down syndrome occurs as a random event during cell division early in fetal development. As a result, some of the body’s cells have the usual two copies of chromosome 21, and other cells have three copies of this chromosome. Because mosaic Down syndrome is so rare, there is very little known about this condition.

This is all a parent of a child with mosaic Down syndrome had to go by before IMDSA became the leading organization for mosaic Down syndrome.

Parents of children with Trisomy 21 Down syndrome, at least have a bit of a guideline on what to expect. They have a large network of families they can identify with in their community because many families (often thousands) have a child with Trisomy 21 Down syndrome in one area.

But, for mosaic Down syndrome, because it is considered rare, that kind of support and information is not available locally.

One of IMDSA’s main goals back when we first began was to offer families information on what mosaic Down syndrome meant for their child. With eight years behind us as an organization, seven of those years as a non-profit, we are getting there!

We have recruited many researchers to discover more about mosaic Down syndrome and now, we are finally at a place where we can offer small scholarships to Masters Students to increase our knowledge.

We have just launched our world-wide campaign to raise funds to continue with this research. And, we have found that our research will not only benefit those with mosaic Down syndrome, but also those with Trisomy 21 Down syndrome because when a researcher closely looks at the two cell lines located in a person with mosaic Down syndrome, they are able to identify interesting aspects in the body that are affecting those with both types of syndromes.

In order to make this world-wide launch of raising funds for research, we have enabled families to make teams to raise funds and have some fun along the way!

The top fundraising team will receive a packet full of Awareness items and some fun stuff! The contest will end on October 31, 2008.

No matter if your child has Trisomy 21 Down syndrome or mosaic Down syndrome, you can be part of this event and help discover more about all forms of Down syndrome.

To start your team and learn all about this exciting event, just visit our website!

Not a team leader but still want to help discover more about all forms of Down syndrome? You can donate directly to IMDSA through the widget below and see our short slide show of some of who these funds will help.

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