About a year ago I shared with you all about the devastating news that my nephew Brennan was diagnosed with a rare disease called Tay-Sachs. When we first got the diagnosis of Tay-Sachs we had no idea what it was and it was all very new territory.
The National Tay-Sachs & Allied Disease (NTSAD) Association defines Tay-Sachs as "a genetic disorder caused by the absence of beta-hexosaminidase (Hex-A). This missing enzyme causes cells to become damaged, resulting in progressive neurological disorders. A cure for Tay-Sachs does not yet exist but there are many strategies for managing life with Tay-Sachs." You can learn all about Tay-Sachs and the other allied diseases at NTSAD.org.
Over the last year I have been working with Diana at the NTSAD on a charity quilt project. Though this is a very rare disease there are many families who have been affected by it and I would love to touch those families lives through quilting. I know how much joy a quilt can bring to a family and so my hope is no matter where that family is in their Tay-Sachs walk they will be blessed by this project. And I am very much hoping you can help!
The goal with this charity quilt project is to provide beautiful, custom, throw or lap size modern quilts to the families affected by Tay-Sachs and the other allied diseases. To do this it is our plan to assign one family to every interested quilter (or group of quilters such as a guild).
Diana of NTSAD has already let the families know of this project and has asked that any family interested in receiving a quilt answer a few questions that we prepared. Our goal in asking the family questions was two fold, first so that you have a inspiration for the quilt, but also so you can learn about the family you are quilting for. If you decide you would like to participate in this project and would like to make a quilt here are the steps:
Thank you so much for considering participating in this project, your support is the only way it will be a success. If your not available to make a quilt, sharing about the project would be just as much appreciated!
On January 13, 2015
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