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21/06/07
Global Day Message from Rod Harris Chair of the International Alliance of ALS/MND Associations
Members of the International Alliance
This year is the Tenth Global Day of Recognition of ALS/MND.
As a day of recognition it is a wonderful coming together of all who engage in the fight against this insidious disease.
Unfortunately, the fight against ALS/MND not only brings out people with passion, commitment, dedication and hard work, but it also brings out those who would offer false hope, and unproven treatments, to people who are desperate for anything that will slow, stop or reverse this cruel disease.
ALS/MND is no different than any other human endeavour – there are always people willing to peddle myths, promise hope, claim cure but mainly remove money from the hands of those who are desperate to remove ALS/MND from their lives.
What can we do to prevent these people from raping and pillaging people with ALS/MND and their families?
We have to respect the rights of people living with ALS/MND to make their own decisions and pursue their own directions in fighting ALS/MND. But we can give them some tools and questions to ask so that they can make informed choices about what to decide and which way to go. Just as we provide information about any clinical intervention to assist in decision-making, we can give them information so that they understand the basis of the decisions they are making in relation to unproven therapies and treatments.
The Alliance has published its document on Alternative Treatments, and it is available at www.alsmndalliance.org/resources.html. This document provides key questions and areas of inquiry to assist people living with ALS/MND to inform themselves about possible courses of action they may consider. ‘Alternative’ refers to treatments or interventions that are not part of mainstream (conventional or Western) medicine and generally have not been scientifically documented and/or may not be recognised as being safe and effective for ALS/MND.
I would ask that on this Global day, every ALS/MND Association, and every person working with people who are living with ALS/MND, make themselves aware of this important policy document. Make it freely available to anybody who is considering alternative treatments for this disease. Once people are informed, all we can do is support them in their decision-making, and ask them to report back on the impact of their treatment on ALS/MND so that we can report to our members and others.
Global Day is one day that members of the International Alliance should reflect on our dedication and role in the fight against ALS/MND. Many of us have awareness days, weeks and even a month of recognising ALS/MND, but on this day - on 21 June - we can stop and reflect that we are not alone in our fight against this rotten disease. We stand beside patients, carers, former carers, scientists, health care professionals, volunteers and many, many others as the warriors in this fight.
So what will be happening today? Around the world a variety of events will be taking place. From picnics and social gatherings, from strategic publicity campaigns to distribution of posters and information, and many other events. The most important thing happening today is our own recognition - recognition that we are not alone.
I ask that, at some time on 21 June, you stop and reflect on the nature and scale of the fight we are all part of. Be proud that we work to improve quality of life for people living with ALS/MND, and provide support to help those people live better for longer.
I congratulate you all on your efforts and your successes. I encourage you to maintain hope that the causes of ALS/MND will be found, that better treatments will be developed, and a cure will be discovered. And I applaud your strength, passion and compassion as we fight ALS/MND.
On behalf of people living with ALS/MND everywhere in the world, the International Alliance, and its Board of Directors, thank you for your work.
Rodney Harris
Chairman
International Alliance of ALS/MND Associations
This year is the Tenth Global Day of Recognition of ALS/MND.
As a day of recognition it is a wonderful coming together of all who engage in the fight against this insidious disease.
Unfortunately, the fight against ALS/MND not only brings out people with passion, commitment, dedication and hard work, but it also brings out those who would offer false hope, and unproven treatments, to people who are desperate for anything that will slow, stop or reverse this cruel disease.
ALS/MND is no different than any other human endeavour – there are always people willing to peddle myths, promise hope, claim cure but mainly remove money from the hands of those who are desperate to remove ALS/MND from their lives.
What can we do to prevent these people from raping and pillaging people with ALS/MND and their families?
We have to respect the rights of people living with ALS/MND to make their own decisions and pursue their own directions in fighting ALS/MND. But we can give them some tools and questions to ask so that they can make informed choices about what to decide and which way to go. Just as we provide information about any clinical intervention to assist in decision-making, we can give them information so that they understand the basis of the decisions they are making in relation to unproven therapies and treatments.
The Alliance has published its document on Alternative Treatments, and it is available at www.alsmndalliance.org/resources.html. This document provides key questions and areas of inquiry to assist people living with ALS/MND to inform themselves about possible courses of action they may consider. ‘Alternative’ refers to treatments or interventions that are not part of mainstream (conventional or Western) medicine and generally have not been scientifically documented and/or may not be recognised as being safe and effective for ALS/MND.
I would ask that on this Global day, every ALS/MND Association, and every person working with people who are living with ALS/MND, make themselves aware of this important policy document. Make it freely available to anybody who is considering alternative treatments for this disease. Once people are informed, all we can do is support them in their decision-making, and ask them to report back on the impact of their treatment on ALS/MND so that we can report to our members and others.
Global Day is one day that members of the International Alliance should reflect on our dedication and role in the fight against ALS/MND. Many of us have awareness days, weeks and even a month of recognising ALS/MND, but on this day - on 21 June - we can stop and reflect that we are not alone in our fight against this rotten disease. We stand beside patients, carers, former carers, scientists, health care professionals, volunteers and many, many others as the warriors in this fight.
So what will be happening today? Around the world a variety of events will be taking place. From picnics and social gatherings, from strategic publicity campaigns to distribution of posters and information, and many other events. The most important thing happening today is our own recognition - recognition that we are not alone.
I ask that, at some time on 21 June, you stop and reflect on the nature and scale of the fight we are all part of. Be proud that we work to improve quality of life for people living with ALS/MND, and provide support to help those people live better for longer.
I congratulate you all on your efforts and your successes. I encourage you to maintain hope that the causes of ALS/MND will be found, that better treatments will be developed, and a cure will be discovered. And I applaud your strength, passion and compassion as we fight ALS/MND.
On behalf of people living with ALS/MND everywhere in the world, the International Alliance, and its Board of Directors, thank you for your work.
Rodney Harris
Chairman
International Alliance of ALS/MND Associations