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Genetic disease education and screening

ᐊᐙᔥ ᐋᐦᑯᓱᐎᓐ ᐋᑳ ᒌ ᓂᑎᑯᑖᒡ

Program objectives

  • Increase awareness about Cree leucoencephalopathy (CLE) and Cree encephalitis (CE)
  • Ensure access to voluntary counselling and screening for persons of childbearing age
  • Support the Eeyou Awash Foundation.

Why this program?

CLE and CE are lethal hereditary diseases that can be transmitted by healthy parents (carriers) to their offspring. If both parents are carriers for the same disease, the baby has a one in four chance of being affected. Three to four Eeyouch out of thirty carry the genes for CLE; one in thirty carries the genes for CE. One of every 350-400 infants in Eeyou Istchee can be affected by CLE or CE. Neither disease can be cured, but this program offers parents and prospective parents a chance to be screened to see if they carry the genes for these diseases. If a couple is at risk because both partners are carriers, options can be offered to them through counselling.

The program originated out of research sponsored by the Eeyou Awash Foundation (an organization created by the families of children who died of CLE or CE). Based on initial research, a genetic consultant at Montreal’s Ste Justine Hospital recommended that the region develop an educational program to offer people screening and counselling. In 2005, the Cree Health Board endorsed this recommendation with a resolution creating the program.

Short description of program

1. Education

School-based educational sessions are offered to Cree School Board students age 14 and over in Secondary 3-4-5. This provides an opportunity to reach large numbers of young people with information before they start families. The classroom sessions are followed by counselling and screening for students who wish it. Education is also offered in other settings such as Continuing Education classes and workplaces.

2. Counselling and screening

Counselling/screening is offered to individuals and couples so as to:

  • Inform them about CLE and CE and the prospects for children affected by these diseases;
  • Explain how these diseases are transmitted and the role of heredity;
  • Explain the various options open to couples at risk;
  • Assist them to make their decision, taking into consideration their beliefs, values, and objectives.

3. Support for the Eeyou Awash Foundation

The program supports the Foundation in initiating projects regarding these diseases. It also provides professional support for Foundation members who are intervening with affected families. More info on the Eeyou Awaash Foundation: https://www.facebook.com/groups/162304037245797/

Targeted clientele

The target groups for the program are, in order of priority:

  • Couples with pregnancy
  • People with a family history of CLE or CE
  • Any individual of childbearing age (14 years old and older)

Who delivers the program?

The program is part of the Awash Miyupimaatisiiun activities, and is coordinated by

[This position is currently vacant]

View an episode of the Cree language CBC program Maamuitaauu that talks about these diseases (in Cree with English subtitles).