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Quilts for for Tay-Sachs and Allied Diseases

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

Quilts for Tay-Sachs

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

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).

How It Will Work

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:

  1. Fill out the following form.
  2. We have families of NTSAD joining the project monthly. We will hold your submission until a family is ready, at which time we will send you the families information so you can begin your quilt. I will also be providing information on how you can get batting and supplies for your project at a discount.
  3. We ask that the quilt be ready to send to the family within about 3 months of the time you receive their information. I understand this is a side project, but we do want to try and be timely. 
  4. Once your quilt is completed you will be responsible to ship the finished quilt directly to the family (in the US). 

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!

Quilts for Tay Sachs


    Post Comments

  • Sonja McLane says...

    i am a 38 year old recently disabled nurse. I love doing things for charity!!! Unfortunately I can’t afford supplies right now:-( if someone were to send me supplies I would love to donate my time!!!!!!

    On January 13, 2015

  • Elizabeth says...

    In my past I have taken care of a child with this rare condition so it would be a privilege to give a quilt to a family.

    On November 02, 2014

  • SewCalGal says...

    I happily signed up and I’ve also added your badge for this to a page I maintain for increasing awareness of such efforts:


    On September 28, 2014

  • Jenn says...

    I just signed up as well! Thank you for providing a way to give back!

    On September 28, 2014

  • Stephanie says...

    I just signed up! Love this idea and the process you have come up with. It is more personal to both sides this way!

    On September 27, 2014

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Alyssa Lichner from Pile O' Fabric

Welcome to the Pile O’ Fabric blog, my name is Alyssa Lichner, I live in sunny Gilbert, AZ. I am a freelance web and graphic designer turned avid sewist. I write modern quilting tutorials and share techniques and inspiration here at Pile O’ Fabric… Read More

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