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The Battle to Eradicate Genetic Diseases

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The Battle to Eradicate Genetic Diseases T THE CANADIAN JEWISH NEWS 8 Cover Story MARCH 17, 2016 The battle to eradicate genetic diseases Expanded testing is good news for the Jewish community, but it’s still too early to declare victory over Tay-Sachs and other afflictions LILA SARICK “I love Jacob with my heart and soul. [email protected] He’s changed my life for the better, but his life is very difficult, and he struggles so Jacob Schwartz was just a few weeks old greatly,” she said. when his parents noticed something was “I’m so grateful he’s here. Knowing I’m wrong. His eyes didn’t seem to track, and going to lose him is quite devastating.” he was having difficulty holding his head Not long after learning about Jacob’s up. prognosis, Ellen and her husband Jeff, Within a few months, they received the along with National Council of Jewish devastating diagnosis that their first-born Women Canada (NCJWC), began lobbying child had Canavan disease, a fatal, incur- to have provincial health care plans offer able genetic disorder. and cover a wider range of genetic tests, Adding to the family’s anguish was the and to expand the community’s aware- knowledge that in the United States, Ca- ness of testing. navan was among the genetic diseases The Schwartz family’s foundation, Ja- that were part of the standard screening cob’s Ladder, has raised almost $3 million for Ashkenazi Jewish couples. At the time, for awareness about genetic testing, re- 1997, in Canada, Jews were only being search and therapy programs. routinely tested for Tay-Sachs, the most Today, in Canada, seven genetic diseases common of the genetic diseases identified are on the standard testing panel for Ash- in the Ashkenazi Jewish population. kenazi Jews. All the diseases are recessive, Jacob, now 18, has lived far longer than meaning both parents must be carriers to was ever expected, but his mother Ellen have an affected child. lists the things he can’t do. He can’t see, eat Jews of Sephardi background are advised FileName: LAMP_WM_AD_NewmanGroup_Layout 2_0715-FIN Publication: Canadian Jewish News or move,Canadian Marketing and suffersTrim: 5.06” from x 6” severe scoliosis. to be screenedMaterial Deadline: for JulyTay-Sachs 31, 2015 and thalas- 100 Yonge Street, 16th Floor Bleed: 0.125" Safety: n/a Mech Res: 300dpi Insertion Dates: Recently,Toronto, ON M5C the 2W1 familyColours: learned CMYK his disease semia, according to Toronto’s Mount Sinai has “severely progressed.” Hospital. Helping our clients focus on what really matters Ellen and Jeff Schwartz, with their children, from left, Benjamin, Jacob and Beverly at Benjamin’s bar mitzvah. DARREN LEVANT PHOTO Lorraine Berk, chairperson of Jewish ge- While no numbers are available, Dr. Da- Discretionary Asset Management can be an netic diseases project for NCJWC, recalls vid Chitayat, head of the prenatal diag- ideal solution for busy professionals, business the first mass screening for genetic dis- nosis and medical genetics program at owners, retirees, frequent travellers, or those eases NCJWC organized in 2001 attracted Mount Sinai, said the incidence of babies who simply do not wish to deal with the about 300 people. born with Tay-Sachs to Jewish parents in day to day demands of portfolio management. Initially, NCJWC volunteers across the Ontario is very low, because of testing. Allowing you to take a hands-off approach, country focused on educating doctors Most Tay-Sachs babies today are born to this full service program ensures that and rabbis, professionals who would see non-Jewish parents. Allan Newman your financial goals are met with expertise, young couples, about the need for genetic At the National Tay-Sachs and Allied H.B.A., LL.B., C.I.M convenience and peace of mind. testing. Diseases Association in Boston, executive Director, Wealth Management Now, as testing becomes one more rou- director Sue Kahn said the group once Associate Portfolio Manager tine task at the doctor’s or midwife’s office, saw about 100 Jewish children born with and Senior Wealth Advisor www.NewmanGroup.ca NCJWC organizes fewer large screenings. Tay-Sachs annually. Today, the association However, every few years, it sponsors one – which also represents Canadians, since 416-863-7750 / 800-387-0489 and every time, even when just 40 to 60 the Canadian branch closed several years [email protected] people come out, carriers are discovered, ago – sees five or fewer. But it’s too early to Berk said. About one person in 30 in the declare a victory, she cautioned. Ashkenazi Jewish community is a carrier “Some people say Tay-Sachs has been for Tay-Sachs, the most common of the eradicated. It makes us crazy,” Kahn said. genetic diseases. Children are still being born with the Greg Newman For Schwartz, genetic testing has be- disease, because intermarried Jewish B.Comm, LL.B., C.I.M come paramount. “We celebrate every couples and their physicians don’t see a Director, Wealth Management day he [Jacob] is alive,” she said. “But need for testing, when in fact, Tay-Sachs Associate Portfolio Manager and Senior Wealth Advisor would I knowingly bring someone into the is prevalent in other ethnic groups, such world who is going to suffer? I don’t think I as French Canadians. (The association would do that.” is currently involved in a study looking ® Registered trademark of The Bank of Nova Scotia, used by ScotiaMcLeod. ScotiaMcLeod is a division of Scotia Capital Inc. (“SCI”). In many ways, expanded testing and at the incidence of Tay-Sachs in the Irish SCI is a member of the Investment Industry Regulatory Organization of Canada and the Canadian Investor Protection Fund. awareness has been an unheralded good- population in the United States.) news story. CONTINUED ON NEXT PAGE THE CANADIAN JEWISH NEWS T MARCH 17, 2016 First of a two-part series 9 On occasion, children conceived using organization. untested donor eggs or sperm can also A similar number of teens are tested in The seven genetic diseases in the have the genetic disease, Kahn said. Montreal, said a Montreal spokesperson, There is also a risk of complacency. Un- who did not want to give her name. In Ashkenazi Jewish screening panel like the large-scale efforts to eradicate fact, few people would enter a shidduch infectious diseases, genetic testing is an without first consulting Dor Yeshorim, she ongoing process. Some people assume said. CARRIER FREQUENCY that because there is no family history of But in an age when consumers seek to IN THE JEWISH disease, they are unaffected. However, be- know everything about their health, Dor DISEASE cause these diseases are recessive, there is Yeshorim’s results are cloaked in secre- POPULATION still a risk, Kahn said. cy, so that individuals don’t know if they She also hears people say their mother are carriers of a recessive gene or which was screened, so they don’t need screen- disease it is. Those tested receive only an BLOOM SYNDROME 1 IN 102 ing, not realizing that many more diseas- identifying number. es have been identified since Tay-Sachs Matchmakers call Dor Yeshorim with screening began. the identification numbers for a proposed CANAVAN DISEASE 1 IN 57 For ultra-Orthodox families, where ar- couple, and the introduction only takes ranged marriages are the norm and strict place if the two numbers are cleared. halachic rules about family planning ap- “The person who is a carrier is not sick,” FAMILIAL DYSAUTONOMIA 1 IN 32 ply, genetic screening takes on a different said Dyman explaining the confidentiality complexion. policy. “But for some people, maybe those Dor Yeshorim, an organization started who are less educated, that would carry a FANCONI ANEMIA GROUP C 1 IN 89 by a rabbi who lost four children to Tay- stigma for that person.” Sachs, screens thousands of haredi young Since the organization started, about people in North America, Europe and Is- 400,000 individuals have been screened, MUCOLIPIDOSIS IV 1 IN 100 rael annually. and about 1 in 100 matches are incom- In Toronto and Montreal, a representa- patible, or as a letter from founder Rabbi tive from the New York-based group visits Yosef Ekstein in Dor Yeshorim’s newslet- NIEMANN PICK DISEASE 1 IN 90 annually and tests Grade 12 students in ter states, “sparing over 4,200 families the girls’ high schools and boys’ yeshivas. In horror of losing children.” Toronto, about 300 young people are test- Dyman says it’s a privilege to assist in TAY-SACHS DISEASE 1 IN 30 ed annually for nine fatal or debilitating the screening program. “It’s quite beauti- recessive genetic diseases, said Marianna ful to remove the sorrow from the family. Dyman, the Toronto representative for the It’s such a mitzvah.” n Source: Hospital for SickKids CIJA among groups pushing for Carrier Carrier Father Mother law against genetic discrimination LILA SARICK of disease-focused groups to ensure that [email protected] Canadians cannot be compelled to sub- mit to genetic testing or reveal informa- Canada is the only G7 nation that does tion, as a condition of employment or to not have legislation that protects individ- get insurance, Marceau said. uals from having their own genetic infor- It’s becoming an increasingly urgent mation used against them by employers problem, he said. Thirteen years ago, or the insurance industry. there were genetic tests for 100 diseases. It’s a cause that the Centre for Israel and Today there are more than 32,000. Jewish Affairs (CIJA) has thrown its weight “As we move toward personalized Rr Rr behind, primarily because a number of medicine and more widespread genetic genetic mutations and illnesses have been testing, we would not want that advance identified first in the Jewish population.
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