|
The Stephanie Just Memorial Fund
|
The Stephanie Just Memorial Fund is a Toronto-based fund-raising organization devoted to ensuring genetic awareness. The SJMF hopes to establish genetic testing as standard-of-care for at-risk couples. In conjunction with the National Council of Jewish Women, Jacob's Ladder, the Dysautonomia Foundation, and other organizations, the SJMF works to publicize the availability and administration of genetic tests for diseases such as Tay-Sachs Disease, Canavan Disease, Familial Dysautonomia, Fanconi Anemia Type C, Mucolipidosis IV, Niemann-Pick Disease Type A, and Bloom Syndrome. The majority of these diseases are carried by a recessive allele, meaning that couples are faced with a 25% chance of having an affected child only if both carry the specific disease's gene.
The Stephanie Just Memorial Fund was established in 2002 by Caroline Just, a 12-year-old girl who proposed the idea to her parents as a way of marking her becoming a Bat Mitzvah. Her idea was sparked by the discovery of a genetic test for Familial Dysautonomia, a neurodegenerative disease that Caroline's older sister Stephanie Just had died from in 1987. Until early 2009, the SJMF was known as the Caroline Just Bat Mitzvah Project.
|
