Theresa2004
Distinguished member
- Joined
- Apr 14, 2004
- Messages
- 292
Generally a purely fictional reader of sagas, romance, mysteries, intrigue, etc, always a book in progress, pages folded over on the couch to save where I had left off, I was loaned the first autobiography I have ever read, Michael J Fox, "Lucky Man". I found the book rivetting, having watched him as an actor in Family Ties, and of course, Back to the Future films. His story details his life in Canada, rise to stardom, and most poignant, his diagnosis and eventual acceptance of Young Onset Parkinsons. There are so many sections of the book I would love to post, which can be transferred to any debilitating disease, but there are far too many. I will post a few, directly quoted from his book. If anything, it may get everyone thinking how to fracture and infultrate the brick wall of awareness and funding we all face. Note, some of this information is from his stats in the late 1990's. His research on funding.
"Any number of special interest groups, be they AIDS, cancer, or Parkinson's advocates , are all competing for the a bigger slice of the pie. What's really needed, of course is simply a much bigger pie. So why do some patient groups get more than others? And why are others life out in the cold when the money's being doled out? The answer lies, in part, with the fervour and commitmnet of the lobbying effort, and that starts in the patient community."
He uses the AIDS community as his example, where the population of young vibrant, creative and often afluent ones, in a large gay population, mobilized themselves to be heard.
Since Parkinson's generally hits the aged, Young onset accounts for about 10 percent of patients. So they are left, unheard. He writes about a lawyer named Greg, who was diagnosed as an early adult. When Michael J Fox finally told the world after seven years of his condition, Greg wrote this to him.."this is sort of embarrassing to say, but I have to tell you that my reaction was "thank god"". A famous person with a not so famous disease. They had a voice! Sad.
Lastly from the book , I recalled a story relayed to me about a tug of war between the USA and Canada over the ALS logo use created in the US and used in Canada, much to their dismay, and our infringement to the rights.
As he becomes an advocate for his disease, within his research to study the players he makes this remark.
"I soon began to understand that one of the reasons that Parkinson agenda had not been carried out with a sense of purpose and unity had a lot to do with the factional nature of many of these groups, which refused to work together."
As most of us know, he became and remains a very vocal advocate for this disease, presenting his arguements for research, treatment, and humanitarian treatment for those who have lost their jobs, and insurance as a result to Congress, and his push for stem cell funding.
So what can we do as a minority amongst the deluge of terminal diseases? Rally together, form teams, strong groups of patients, caregivers, of loved ones and family and have our stories heard. Rally at our local provincial government buildings like many protesters do, walk with signs to protest the lack of research, the lack of awareness, then move along to Ottawa. Now, I am sure the media would come out for that, unless of course there is another designer dog show to be covered by our local TV stations, then of course we are SOL.
I found so many parallels to his advocacy and his battle to be heard. For a cure to ever be found, a treatment to slow the onset of this, there should be no divisions of boundaries; of countries. But if we have to, then the various cross country chapters for ALS should join together, create an ALS awareness day and rally in front of everyones "Queens Park" to be heard.
We want funding, we need awareness. And we need the coordination/cooperation of all North American Chapters to accomplish this.
No guys, I am not crazy, maybe a bit too much caffeine today, but a united voice is what will ultimately push for all MND patients.
"Any number of special interest groups, be they AIDS, cancer, or Parkinson's advocates , are all competing for the a bigger slice of the pie. What's really needed, of course is simply a much bigger pie. So why do some patient groups get more than others? And why are others life out in the cold when the money's being doled out? The answer lies, in part, with the fervour and commitmnet of the lobbying effort, and that starts in the patient community."
He uses the AIDS community as his example, where the population of young vibrant, creative and often afluent ones, in a large gay population, mobilized themselves to be heard.
Since Parkinson's generally hits the aged, Young onset accounts for about 10 percent of patients. So they are left, unheard. He writes about a lawyer named Greg, who was diagnosed as an early adult. When Michael J Fox finally told the world after seven years of his condition, Greg wrote this to him.."this is sort of embarrassing to say, but I have to tell you that my reaction was "thank god"". A famous person with a not so famous disease. They had a voice! Sad.
Lastly from the book , I recalled a story relayed to me about a tug of war between the USA and Canada over the ALS logo use created in the US and used in Canada, much to their dismay, and our infringement to the rights.
As he becomes an advocate for his disease, within his research to study the players he makes this remark.
"I soon began to understand that one of the reasons that Parkinson agenda had not been carried out with a sense of purpose and unity had a lot to do with the factional nature of many of these groups, which refused to work together."
As most of us know, he became and remains a very vocal advocate for this disease, presenting his arguements for research, treatment, and humanitarian treatment for those who have lost their jobs, and insurance as a result to Congress, and his push for stem cell funding.
So what can we do as a minority amongst the deluge of terminal diseases? Rally together, form teams, strong groups of patients, caregivers, of loved ones and family and have our stories heard. Rally at our local provincial government buildings like many protesters do, walk with signs to protest the lack of research, the lack of awareness, then move along to Ottawa. Now, I am sure the media would come out for that, unless of course there is another designer dog show to be covered by our local TV stations, then of course we are SOL.
I found so many parallels to his advocacy and his battle to be heard. For a cure to ever be found, a treatment to slow the onset of this, there should be no divisions of boundaries; of countries. But if we have to, then the various cross country chapters for ALS should join together, create an ALS awareness day and rally in front of everyones "Queens Park" to be heard.
We want funding, we need awareness. And we need the coordination/cooperation of all North American Chapters to accomplish this.
No guys, I am not crazy, maybe a bit too much caffeine today, but a united voice is what will ultimately push for all MND patients.