ALZHEIMERS DISEASE (Name Withheld) Subject: My Letter on Genetic Disease for the Expert Panel Dear Panel Members: One year ago my sister and I buried our mother. The feelings of loss when a parent dies are no doubt familiar to those on the panel, but I believe the end of her life must have seemed a blessing to my mother as it ended seven years of suffering and loss. My mother was another victim of Alzheimer's disease. Watching my mother slowly reduced from a healthy and independent woman looking forward to enjoying the remaining years allotted her to a confused and fearful person, stripped of dignity and spirit and with seemingly no capacity to enjoy even the simplest things, was painful beyond description for those of us who loved her. Only those who have gone through it can possibly understand. But our sadness would not have been unfamiliar to my mother. My aunt manifested the symptoms of this illness six years before her and she had to watch her suffering as well. In 1956 they buried their mother after years of coping with the burden of caring for my grandmother during her long battle with that same terrible disease. Our grandmother carried her own memories of the effects of Alzheimer's disease on a family as she, as the youngest daughter, carried the responsibilities of caring for her own mother in the last years of her life -- another victim of that disease. I have since learned that I have had great-uncles and great-aunts and cousins as well die from the effects of this nasty form of dementia. It is now beyond question that this disease is in some way being genetically handed down in our family and the fate of my mother, grandmother, and great-grandmother MAY VERY WELL BE MY OWN. There is but one hope for myself and the younger members of our family: the cause of this form of genetically transmitted Alzheimer's Disease must be found and research for a cure must be pursued. I am doing what I can. - 6 - ------------------------------------------- Alzheimers Disease - Continued:- As a genealogist I have undertaken the sometimes difficult and frustrating work of compiling my family tree by gathering information from public, private, and family records and memory and turning that family tree into a medical pedigree of sufficient detail and depth that it will be useful as a research tool for genetic scientists seeking the causes and the cure of this terrible disease. Such medical family trees are the bedrock of research into the causes of almost every disease known to be genetic in origin. Already large family trees have proven the key to uncovering the genes that cause Huntington's Chorea, Cystic Fibrosis, Muscular Dystrophy, and dozens of more common diseases such as types of cancer, diabetes, and heart disease. Canada has been among the leaders in this type of genetic research and many similar studies using family trees are underway across the country. But more needs to be done. I am hoping to offer, with the full knowledge and blessing of family members, our family tree to genetic scientists studying familial Alzheimer's disease in the hope it will lead to progress and bring future relief to the tens of thousands of Canadians who face this disease. When my tree is converted to a medical pedigree all identifying information is stripped from it making it anonymous so it may safely be shared with the medical community. I fear the disease more than I fear the remote possibility of my privacy being violated. Compiling a family tree as accurate and complete as I have done would not have been possible without access to Canada's historical census records. The loss of such future access will significantly damage both genealogy and research into genetic diseases of that there is no doubt in my mind. I feel the privacy violation, if it can even be remotely considered as such, of granting to historians and genealogists access to census records after 92 years is little to ask for so large a gain. I do not accept that the supposed privacy when the rights of the dead take precedence over the right of the living to enjoy healthy and productive lives. I respectively ask the panel not to forget the real consequences on the lives of hundreds of thousands of Canadian men, women, and children suffering genetic diseases now and in the future if historical censuses are closed or destroyed. THEY DESERVE A VOICE IN THIS DEBATE. Thank you. Sincerely, Name Withheld Address/Email Withheld - 7 - ================================ To all:- The CAPITAL letters replace the bold type used in the printed submission. Comments are welcomed and will be saved -- names will not appear in print, as above. Muriel M. Davidson <davidson3542@home.com> Look for THE MYTHS OF CENSUS by gordon A. Watts <http://www.geocities.com/Heartland/Farm/7843/poll.html>