Coping with the day to day strain of life with Tay-Sachs, Sandhoff, GM-1, Canavan or any related disease can be overwhelming, confusing and exhausting. Just knowing that you are not alone can make it easier. Connect with other families!
Meet the Families - profiles and family websites
From Our Families
Appreciate the Road Now by Flory Roman, CB 5-19-10
A Sacred Little Being by Sarah Alford, Lifeline Summer 2009
Journey of Acceptance by Sarah Alford, CB
Reliving the Diagnosis by Sarah Alford, CB 11-25-09
5th Anniversary of Diagnosis Day by Nicole Luce, CB 8-28-08
Other Resources
You Are Not Alone
Welcome to Holland
Welcome to Holland part 2
From Our Families
A Canavan Dad’s Viewpoint by Ken Epstein
Be Careful What You Ask For… by John ten Berge
Challenges of Caring for a Tay-Sachs Child While Working by Dan Pancamo
Dylan Has Changed My Life Forever by Brian Manning
My Daughter by Eric Fier
My Life with Conner by Rodey Watkins
2012
2011
2010
Allie Colaco
Joshua Greenberg
Rebecca Margolis
2009
Joshua Greenberg
Alec Rubenstein
Karin Schroth
2008
Joshua Greenberg
Rebecca Margolis
2007
Michael Callagy
Jess Fine-Gagne
Joshua Greenberg
Michael David Margolis
2006
Jonah Eisenstock
Alex Rhodes Sutton
Lexa Sutton
2005
once for their grandchild and once for their child
Caring for a Sandhoff Grandchild by Sharon Ashford
Reflections from a Grandmother by Kathy Cassista
Two Five Letter Words by Grandpa Rapp
What an Aunt Can Do by Deirdre Lord
Ronan’s Sock by James Lynch
National Tay-Sachs & Allied Diseases Association
2001 Beacon Street
Suite 204
Boston, MA 02135
info@ntsad.org
800-906-8723 phone
617-277-0134 fax
Meet DJ Yang, diagnosed with Tay-Sachs disease. Read his story
