Leading the Fight to treat and cure
Tay-Sachs, Canavan, Sandhoff, GM1 and related diseases


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! Visit Meet the Families to read stories and Become A Member to make connections.

Coping with the Diagnosis

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

Dad's Perspective

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

Gottlieb Sibling Scholarship Recipient Essays


 Andrea Whiteman
 Anna Luetticke
 Daniel Margolis
 Jillian Hopkins


 Andrea Lynne Whiteman
 Anna Luetticki
 Laura Hannah Stephenson
 Rachel Tinman


 Allie Colaco
 Joshua Greenberg
 Rebecca Margolis


 Joshua Greenberg
 Alec Rubenstein
 Karin Schroth


 Joshua Greenberg
 Rebecca Margolis


 Michael Callagy
 Jesse Fine-Gagne
 Joshua Greenberg
 Michael David Margolis


 Jonah Eisenstock
 Alex Rhodes Sutton
 Lexa Sutton


 Lauren Sachs

Grandparents Cry Twice

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

Aunts & Uncles

 What an Aunt Can Do by Deirdre Lord
 Ronan's Sock by James Lynch


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