Leading the worldwide fight to treat and cure
Tay-Sachs, Canavan, GM1 and Sandhoff 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.

Coping with the Diagnosis

From Our Families

  document Appreciate the Road Now (124 KB)  by Flory Roman, CB 5-19-10
  document A Sacred Little Being (130 KB)  by Sarah Alford, Lifeline Summer 2009
  document Journey of Acceptance (127 KB)  by Sarah Alford, CB
  document Reliving the Diagnosis (126 KB) by Sarah Alford, CB 11-25-09
  document 5th Anniversary of Diagnosis Day (124 KB)  by Nicole Luce, CB 8-28-08

Other Resources

  document You Are Not Alone (144 KB)
  document Welcome to Holland (126 KB)
  document Welcome to Holland part 2 (125 KB)

Dad's Perspective

From Our Families

  pdf A Canavan Dad's Viewpoint (374 KB) by Ken Epstein
  pdf Be Careful What You Ask For (1.91 MB)  by John ten Berge
  document Challenges of Caring for a Tay-Sachs Child While Working (29 KB)  by Dan Pancamo
  pdf Dylan Has Changed My Life Forever (3.07 MB) by Brian Manning
  pdf My Daughter (402 KB)  by Eric Fier
  pdf My Life with Conner (1.31 MB) by Rodey Watkins

Gottlieb Sibling Scholarship Recipient Essays


  pdf Andrea Whiteman (313 KB)
  pdf Anna Luetticke (730 KB)
  pdf Daniel Margolis (480 KB)
  pdf Jillian Hopkins (425 KB)


  document Andrea Lynne Whiteman (15 KB)
  document Anna Luetticki (13 KB)
  pdf Laura Hannah Stephenson (444 KB)
  pdf Rachel Tinman (666 KB)


  pdf Allie Colaco (382 KB)
  pdf Joshua Greenberg (7 KB)
  pdf Rebecca Margolis (296 KB)


  pdf Joshua Greenberg (393 KB)
  pdf Alec Rubenstein (451 KB)
  pdf Karin Schroth (560 KB)


  pdf Joshua Greenberg (657 KB)
  pdf Rebecca Margolis (330 KB)


  pdf Michael Callagy (429 KB)
  pdf Jesse Fine-Gagne (214 KB)
  pdf Joshua Greenberg (813 KB)
  pdf Michael David Margolis (304 KB)


  pdf Jonah Eisenstock (134 KB)
  pdf Alex Rhodes Sutton (288 KB)
  pdf Lexa Sutton (205 KB)


  pdf Lauren Sachs (517 KB)

Grandparents Cry Twice

once for their grandchild and once for their child

  pdf Caring for a Sandhoff Grandchild (426 KB)  by Sharon Ashford
  pdf Reflections from a Grandmother (4.09 MB)  by Kathy Cassista
  document Two Five Letter Words (112 KB)  by Grandpa Rapp

Aunts & Uncles

  pdf What an Aunt Can Do (353 KB)  by Deirdre Lord
  document Ronan's Sock (28 KB)  by James Lynch