Alternative Treatments

After a diagnosis of ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig's Disease), a disease for which there is no known cure, many people will search for any information that can keep their hope alive. Many will look to alternative treatments to minimize the devastation that they are feeling.

The ALS Society of Canada has a policy around alternative treatments which clearly states that the society will assume no responsibility for treatments undertaken by a client without approval by a physician.

As a unit of the ALS Society of Canada, we must adhere to this policy. However, the ALS Society of Alberta is interested in knowing what some of the alternative treatments being tried are, and whether people living with ALS feel that these treatments have been successful. We would like to gather this information and compile it so that all clients may have access to it. It is the choice of each client whether to pursue any of these treatments.

Many of our clients here in Alberta have indicated that this kind of information would be helpful - recognizing that there is no known cure at this time, and also that medications that may help can be costly and are often not on the approved lists of many insurance companies.

E-mail us at info@alsab.ca to add information to our listing, or with any comments on this subject.

            Does your organization regard embryonic stem cell research
            as a positive development or a negative development?

Stem cells derived from embryos have the unique potential to improve the lives of those who suffer from many devastating diseases and conditions including ALS. Stem cell research offers the hope of significant progress in drug design and testing, as well as the search for the cause and a cure for ALS. The legislation balances difficult issues with the promise of discoveries possible though health research carried out in a respectful manner.

In an opinion survey conducted in March 2002 by Environics, 76 per cent of Canadians said that they approve of embryonic stem cell research on spare embryos developed through in vitro fertilization, to be used to develop treatments for such diseases as juvenile diabetes, Parkinsons Disease, ALS and muscular dystrophy. The survey also found that 66 percent of respondents approved of giving health researchers the flexibility to use stem cells from either human adult tissue or from human embryos.

The ALS Society of Canada, along with a number of other voluntary health organizations, supported the passage of the Assisted Human Reproduction Legislation which would regulate embryonic stem cell research.

The Act Respecting Assisted Human Reproduction the proposed legislation will govern the use of embryonic stem cells in health research. This act received Royal Assent on the 29th of March 2004. Bill C-6 - Assisted Human Reproduction Act. Based on the federal criminal law power, it would prohibit certain activities and would regulate others with respect to assisted human reproduction and related research. The Government has stated that this comprehensive legislation will protect the health and safety of Canadians using assisted human reproduction, will prohibit unacceptable practices, and will regulate assisted human reproduction activities and related research.

The law bans human cloning and prohibits the sale of sperm and payments to egg donors and surrogate mothers. The governments intention with this law is by no means does the (assisted human reproduction) legislation promote embryo research is to ensure that embryonic research is carefully regulated. The legislation also established an agency, the Assisted Human Reproduction Agency of Canada, to be separate from Health Canada, but reporting to Parliament though the Minister of Health, to oversee licenses for assisted human reproduction procedures or research using in vitro embryos and to ensue peer and ethics review of any proposed project.

In a press release dated 2004-03-16 from the Stem Cell Network (www.stemcellnetwork.ca) it states, The legislation does not address research involving existing derived embryonic cell lines, simply because Canadian scientists have not yet derived tlines of their own. There is separate legislation already in place that deals with importation of existing cell lines being used across the country. Stem cell research is, and may continue to be, addressed by existing overseeing mechanisms such s the Canadian Institutes of Health Research and its Stem Cell Oversight Committee. The new legislation does make clear, however, that an embryo cannot be specifically created for research purposes.

According to Dr. Alan Bernstein, president of the Canadian Institutes of Health Research, For more than 40 years, Canada has been one of the leading countries in the world in stem cell research. In the past five years alone, Canadian researchers including Derek van der Kooy, Sam Weiss, John Dick, Keith Humphries, Andras Nagy and Freda miller have carried out truly pioneering research on stem cells in the retina, brain, blood, mouse embryo and adult skin.

The ALS Society of Canada has not funded any embryonic stem cell research and will not do so, unless there are federally established guidelines.

We will continue to fund neuromuscular research according to the guidelines of the Canadian Institutes of Health Research, one of which involved muscle-derived adult stem cells. The research being proposed would use embryos that would otherwise be discarded and destroyed. 

                                STEM CELL TREATMENTS IN CHINA

Dr. Huang Hangyun is conducting operations in China with ALS patients. He reports that he has treated 40 people with ALS using spinal cord and forebrain injections, each including 2 million olfactory ensheathing cells.

There is information on our web site which we have reprinted with permission from The ALS Association. The article states, At this time, there is not sufficient information about Dr. Huang Hangyuns work in China to indicate with scientific certainty that the treatment is safe and effective. Researchers and clinicians advise The ALS Association that it is premature to recommend this treatment for people with ALS.

There was an article in the Globe and Mail about Dr.. Huang who charges $20,000 for his treatment. In the article it statesthe worlds top medical journals wont publish his studies. Many western neurologists have criticized his techniques. And he is unwilling to submit to a randomized trial of his methods.

The Globe continues on One of the most controversial aspects of his surgery is the source of the cells he injects into the spines and brains of his patients. They are taken from four-month-old human fetuses among the millions aborted every year in China. In each operation, the patient is injected with at least a million cells harvested from olfactory bulbs inside the noses of the fetuses.

Stem cell research is in its early stages of development and much is to be learned and understood about its potential for treating Canadians living with fatal diseases such as ALS.

The ALS Society of Canada has not funded any embryonic stem cell research. The ALS Society of Canada, along with a number of other voluntary health organizations, supported the Assisted Human Reproduction legislation, Bill C-6 An Act respecting assisted human reproduction and related research, which was passed by Canadian parliament on March 29, 2004.

It is important to note that the research being proposed under this Act would use embryos that would otherwise be discarded and destroyed. The research being proposed may well lead to life-extending measures for many. We do fund the work of Dr Jacques Tremblay, of Laval University, using muscle derived stem cells.

                                         Stem Cells at Work: ALS

Stem cell research is in the early stages of development and much is to be learned and understood about its potential for treating Canadians living with fatal diseases such as ALS (also known as Lou Gehrigs disease).

Stem cells derived from embryos have the unique potential to improve the lives of those who suffer from many devastating diseases and conditions including ALS. Stem cell research offers the hope of significant progress in drug design and testing, as well as the search for the cause and a cure for ALS.

ALS researchers find increased indication that stem cell research will contribute to the search for a cure for ALS.

The ALS Society of Canada, along with a number of other voluntary health organizations, supported the passage of the Assisted Human Reproduction legislation which would regulate embryonic stem cell research.

We will continue to fund neuromuscular research according to the guidelines of the Canadian Institutes of Health Research, one of which involves muscle derived adult stem cells.

The ALS Society of Canada has not funded any embryonic stem cell research and will not do so, unless there are federally established guidelines.

Why stem cells?

Stem cell research has the potential to revolutionize the practice of medicine and improve the quality and length of life for individuals affected with ALS. Stem cells play a critical and essential role in the human body, from the embryonic stem cells that can grow into any of the specialized cells (e.g., blood, bone, muscle, brain) that form the body, to adult stem cells that function within the body to repair and regenerate tissue. Understanding the basic biology of stem cells may allow the development of new therapies for many degenerative conditions (e.g., muscular dystrophy, retinal degeneration, Alzheimers disease, ALS, Parkinsons disease, arthritis and diabetes), spinal cord injuries, and blood disorders such as hemophilia.

Research & Drug Trials

The ALS Society of Canada has an excellent section on their webpage that deals with the latest research taking place in Canada and throughout other parts of the world as well as different drug trials. Click on the web address below to go directly to the section of the ALS Society of Canada that interests you:

• ALS Research
• ALS Drug Trials