Friday, August 06, 2010

1p36 Deletion Support & Awareness - Please Vote Today!

It's been a long time. I have many new things to add to the blog but would first like to draw attention to a cause which is near and dear to my heart. I have posted before about Brady's diagnosis of 1p36 deletion. I know the name can be confusing and intimidating. And most medical professionals have never heard of this syndrome. However, it is the most common chromosome deletion and is estimated to occur in 1 on in every 5,000 to 10,000 births. Unfortunately, many individuals remain undiagnosed as newer technology (microarray versus traditional FISH testing) is often required for a correct diagnosis.

A group of parents whose children are affected by 1p36 Deletion have devoted their time and energy to furthering awareness and support for other families affected by this syndrome. These parents have created a non-profit organization, fundraised and hosted several annual conference where families can meet face-to-face with other individuals affected by 1p36 Deletion.

I am asking for your support to further these efforts by voting for 1p36 DSA at the Pepsi Refresh Project site. This cause is in the running for a $50,000 grant which would allow the 1p36 nonprofit group to create brochures and other materials to further awareness and more accurate diagnoses of 1p36 deletion in the medical community.

You can vote for 1p36 DSA every day during the month of August by texting "101439" to Pepsi (73774)... AND...

Search for 1p36 to find this cause and click "Vote for This Idea"

You can vote for 1p36 DSA every day (by both text and on the Pepsi Refresh website) during the month of August.

Please show your support by voting and passing along this information. You couldn't say no to this face, could you?

I know it's an old picture but it is one of my favorites. It was also taken before we received Brady's diagnosis when we felt so very lost, alone and confused by Brady's global developmental delays and other medical issues. Please vote for 1p36 DSA so other families can receive the information and support we have been so lucky to have found.

More information can be found at 1p36 DSA.