Neuro Partners is an association of five organizations that work on behalf of people with progressive neurological diseases. These five organizations have formed a partnership to lobby Quebec's MNAs regarding the common needs of the people they represent:
|5 000 people||850 people||25 000 people|
|20 000 people||600 people|
Neuro Partners speaks on behalf of the over 50,000 Quebecers who have progressive neurological diseases. And this number is increased by the numbers of caregivers, relatives and friends. Through our joint efforts, we hope that the voices of people living with these diseases will be heard.
The common needs shared by these thousands of people are as follows:
- home care;
- access to innovative medications;
- support for family caregivers;
- access to care and services;
- basic funding;
- medical assistance in dying.
These needs are interrelated. Optimization of the resources provided to respond to each one will inevitably improve the quality of life of people with progressive neurological diseases and maximize their autonomy.
Huntington's disease is a genetic, neurodegenerative, and incurable disease. It is linked to the deterioration of certain brain cells and affects 1 in 10,000 people. In addition, there is a 50% chance that a person suffering from the disease will pass it on to their offspring. The disease affects people between the ages of 35 to 50, except for the rare juvenile form which develops before 20 years old. It is characterized by symptoms affecting a trilogy of systems: motor (chorea, uncontrolled movements, swallowing and speech problems, etc.), cognitive (memory, organization, concentration, etc.) and emotional (depression, aggressiveness, obsessive-compulsive disorders, irritability, etc.).
The term "muscular dystrophy" denotes a group of rare neuromuscular disorders that weaken the muscles of the body. The cause, symptoms, severity and development of these disorders, as well as the age at which they appear, vary depending on the exact diagnosis and the individual in question. In Quebec, approximately 5,000 people have muscular dystrophy.
Parkinson's disease is a neurodegenerative disease, the cause of which is unknown. It is mainly characterized by a decrease in dopamine production. It causes motor disorders and many non-motor symptoms, primarily sleep, mood, gastrointestinal, cognitive, sexual and cardiovascular problems, the intensity of which varies from one person to another. The most common motor symptoms are tremor, slowed movement, balance problems and muscle stiffness. Today, an estimated 25,000 Quebecers have Parkinson's disease. There is no cure. The prevalence of Parkinson's disease in Western countries increases with age and it is expected that the prevalence rate will increase even faster than the aging of the population.
Multiple sclerosis (MS)
Multiple sclerosis is a neurological disease in which the immune system attacks myelin, the protective sheath on the nerves of the central nervous system. It causes lesions of the brain and spinal cord. The location of these lesions determines the nature and severity of the symptoms, which vary from one person to another: extreme fatigue, weakness of the limbs, loss of balance, cognitive problems, pain, muscle stiffness, weakness or paralysis, vision problems, bladder and intestinal problems, etc. In general, MS is diagnosed in people aged 15 to 40 years old, and it affects three times as many women as men. In Quebec, close to 20,000 people have the disease. Canada has one of the highest rates of MS in the world.
Amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease)
Also known as Lou Gehrig's disease, amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease that attacks the body's nerve cells and generally results in death within two to five years of the diagnosis. Only 10% of cases outlast this prognosis. As neurons are destroyed, people with ALS become unable to walk, speak, swallow and, finally, breathe: they become prisoners in their own body. The cause of this disease is still unknown and there is no treatment. Approximately 600 Quebecers and 3,000 Canadians are living with ALS. Every time a new case of ALS is diagnosed, else dies of the disease.
Together, we can improve the course of events.