Frontotemporal dementia with motor neuron disease

Common Name(s)

Frontotemporal dementia with motor neuron disease

Frontotemporal dementia (FTD) describes a group of conditions associated with shrinking or degeneration of a portion of the brain (known as the frontal and temporal anterior lobes). This group of diseases is characterized by a decline in either behavior or language. Behavioral changes include boredom, impulsivity, distractibility, compulsive behaviors whereas language difficulties involve difficulty speaking and understanding. Memory is typically unaffected. Motor neuron disease (MND) affects nerve cells which control walking, talking, breathing and swallowing. Frontotemporal Dementia with Motor Neuron Disease (FTD-MND) is a combination of these two disorders and is currently considered a variant or subtype of FTD though disease classification for both groups is under ongoing research. Symptoms of FTD-MND include: difficulty speaking and swallowing, choking risk (aspiration), limb and muscle weakness. Although exact causes of all FTD diseases are still being studied, some cases appear to be inherited (passed through families by an error in the genetic code) but other times the cause is unknown. Outlook after diagnosis remains poor and treatment is limited but focused on specific symptom management. There is a lot of research being done in this field and it may be helpful to reach out to a support group specializing in FTD. (visit also: Frontotemporal dementia. and Motor neuron disease.)

Source: Advocacy organizations associated with the condition.

 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Frontotemporal dementia with motor neuron disease" for support, advocacy or research.

Alzheimer's Association

The mission of the Alzheimer's Association is to eliminate Alzheimer's disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.

Last Updated: 7 Jul 2015

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Association for Frontotemporal Degeneration

The Association for Frontotemporal Degeneration (AFTD) is a nationwide non-profit organization whose mission is to promote and fund research into finding the cause and cure for the frontotemporal dementias; to provide information, education, and support to persons diagnosed with frontotemporal dementias (FTD) and their families and caregivers; and to educate physicians and allied health professionals about FTD.

Last Updated: 8 Jul 2015

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Irish Motor Neurone Disease Assoication

To encourage and promote the best methods of care, education, research and treatment for people with Motor Neurone Disease throughout the State of Ireland, contributing to worldwide efforts in research and development of treatment. To establish and promote models of good practice in the delivery of specialised services to our patients, their families and carers, setting standards of excellence. To communicate widely knowledge of Motor Neurone Disease and related disorders in order to raise awareness in the wider community.

Last Updated: 7 Jul 2015

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Scottish Motor Neurone Disease Association

We want to make Scotland a place where those living with motor neurone disease/amyotrophic lateral sclerosis can expect consistent, high standards of care and where we work directly towards a cure.

Last Updated: 7 Jul 2015

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General Support Organizations

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Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Frontotemporal dementia with motor neuron disease" for support, advocacy or research.

Alzheimer's Association

The mission of the Alzheimer's Association is to eliminate Alzheimer's disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.

http://www.alz.org

Last Updated: 7 Jul 2015

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Association for Frontotemporal Degeneration

The Association for Frontotemporal Degeneration (AFTD) is a nationwide non-profit organization whose mission is to promote and fund research into finding the cause and cure for the frontotemporal dementias; to provide information, education, and support to persons diagnosed with frontotemporal dementias (FTD) and their families and caregivers; and to educate physicians and allied health professionals about FTD.

http://www.theaftd.org

Last Updated: 8 Jul 2015

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Irish Motor Neurone Disease Assoication

To encourage and promote the best methods of care, education, research and treatment for people with Motor Neurone Disease throughout the State of Ireland, contributing to worldwide efforts in research and development of treatment. To establish and promote models of good practice in the delivery of specialised services to our patients, their families and carers, setting standards of excellence. To communicate widely knowledge of Motor Neurone Disease and related disorders in order to raise awareness in the wider community.

http://www.imnda.ie

Last Updated: 7 Jul 2015

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Scottish Motor Neurone Disease Association

We want to make Scotland a place where those living with motor neurone disease/amyotrophic lateral sclerosis can expect consistent, high standards of care and where we work directly towards a cure.

http://www.scotmnd.org.uk

Last Updated: 7 Jul 2015

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General Support Organizations

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Scientific Literature

Articles from the PubMed Database

Research articles describe the outcome of a single study. They are the published results of original research.
The terms "Frontotemporal dementia with motor neuron disease" returned 0 free, full-text research articles on human participants.

Reviews from the PubMed Database

Review articles summarize what is currently known about a disease. They discuss research previously published by others.
The terms "Frontotemporal dementia with motor neuron disease" returned 0 free, full-text review articles on human participants.

 
 
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Clinical Trial Information This information is provided by ClinicalTrials.gov

Investigating Complex Neurodegenerative Disorders Related to Amyotrophic Lateral Sclerosis and Frontotemporal Dementia
 

Status: Recruiting

Condition Summary: Frontotemporal Lobar Degeneration; Amytrophic Lateral Sclerosis; Progressive Supranuclear Palsy

 

Last Updated: 10 Jul 2018

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Genetic Study of Familial and Sporadic ALS/Motor Neuron Disease, Miyoshi Myopathy and Other Neuromuscular Disorders
 

Status: Recruiting

Condition Summary: Amyotrophic Lateral Sclerosis; Frontotemporal Dementia; PLS; Motor Neuron Disease; Lou Gehrigs Disease; Familial Disease; Amyotrophic Lateral Sclerosis, Sporadic; Muscular Dystrophy; Miyoshi Myopathy

 

Last Updated: 5 Sep 2018

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Genetics of Familial and Sporadic ALS
 

Status: Recruiting

Condition Summary: Amyotrophic Lateral Sclerosis (ALS); Familial Amyotrophic Lateral Sclerosis; Amyotrophic Lateral Sclerosis With Frontotemporal Dementia; Lou Gehrig's Disease; Motor Neuron Disease; Primary Lateral Sclerosis

 

Last Updated: 27 Mar 2018

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