1P36 Deletion Syndrome Fund!

Dear Friends,
As some of you know, my 20 month old son, Samuel, has a rare genetic disorder called 1P36 Deletion Syndrome or Monosomy 1P36. This genetic anomaly is present in only 1 in every 5000-10,000 births and affects every aspect of my son's life.

Samuel's congential heart defects, Dilated Cardiomyopathy, Ventricular Septal Defect (VSD), and Atrial Septal Defect (ASD) are secondary to his 1P36 diagnosis. Samuel had a successful open-heart surgery last August to repair the VSD and ASD. However, the Cardiomyopathy is a defect that will require several heart medications and echocardiograms for the rest of his life. He is seen by six specialists and several therapists to help him progress and stay healthy.

1P36 Deletion Syndrome was diagnosed only about 10 years ago and very little is known about its causes and means of treatment. Families affected by it are spread far and wide. To help each other, we have formed an internet-based support group to share knowledge and assist those affected by this syndrome.

In order to further research and discover better ways to help affected children, our support group has recently formed a non-profit organization called the 1P36 Deletion Syndrome Fund. Contributions to this fund are 100% dedicated to improving life for these special children and raising public awareness about the sydrome. There is no overhead for administration since the fund is managed by 1P36 parents who volunteer their time. The fund also helps sponsor an annual conference for healthcare providers, therapists, and 1P36 families to meet and learn more about caring for those with the disorder.

If you would like to make a tax deductible contribution to the 1P36 Deletion Syndrome Fund please contact me via email shayrenee@hotmail.com or call me at (518) 420-4371. To learn more about 1P36 Deletion Syndrome please visit 1p36.com. Or if you would like to learn more about my son Samuel's experiences and progress, visit my blog at http://samuelbartlett.blogspot.com
Thank you for making a differnce!
Shannon Bartlett
Proud Mommy of a 1P36 Deletion Child
You can also send donations to me at
12 MacDonough Street Apt. 4
Plattsburgh, NY 12901

Also wanted to mention that my mother (Diane) and sister Andrea are putting together a bake sale to help raise funds! It will be August 1st starting at 8:00am at Chittenden Bank in Newport, Vermont!! Please go down and buy some goodies! I promise it will be yummy!

Please make checks payable to 1P36 Deletion Syndrome Fund