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What is Mitochondrial Disease?
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A Mother writes
Mitochondrial Misconceptions
Eyelid Lifting
Feeling the Force
Getting Help from Authorities
The Internet :Proceed with Caution
Mitochondrial NCG Diagnostic Service
Links for Mitolinks,Mitochondrial Disease Information Network
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Affected by Mitochondrial Disease?
 | Our Aim
to direct those suffering from mitochondrial disorders to those organisations both voluntary and statutory which may be able to help them
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Muscular Dystrophy Campaign
 Muscular Dystrophy Campaign and Mitochondrial Research.
The Muscular Dystrophy Campaign is the foremost U.K. charity dealing with all varieties of neuro-muscular disorders. Its funding projects include commitments to mitochondrial research.As Professor Doug Turnbull of Newcastle University, one of the world's leading authorities on Mitochondrial Disorders says:
" Without their grants there would be very little done in the U.K."
Family Care Officers
The MD Campaign also offers practical support in the day-to-day living problems through its regional network of Family Care Officers (FCO) trained to help , advise and act as liaison with social and health services.
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CLIMB
Children Living with Inherited Metabolic Diseases.
This is the other major U.K. charity which takes an interest in Mitochondrial Disease where children or young people are involved.
Mitochondrial cytopathies are metabolic disorders.
This is a well established and experienced charity which can support and advise families affected by mitochondrial disease.In addition to professionals,volunteers known as ‘befrienders’ are trained to give support to affected families. There are some branches throughout the country and support groups. (For example recognizing the impact on the wider family there is a support group for grandparents.)
CLIMB also provides funding for research into metabolic diseases
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Republic of Ireland
Muscular Dystrophy Ireland
Muscular Dystrophy Ireland's Family Support Service has been operational since 1990. MDI employs five Family Support Workers whose role is to visit members in their own homes and to identify, evaluate and advise on the problems that arise with neuromuscular conditions. The Family Support Worker also provides information on the various neuromuscular conditions and on welfare issues which are not always readily available to families.
Through home visits, the Family Support Worker develops a relationship with the families and can spend sufficient time with them so that they can understand the information which has been provided. Families need to be able to talk about their experience of the condition, from the time they first noticed the symptoms to their contact with the medical profession at the time of diagnosis and later. They will also need to share their worries and concerns about the future and to know that they are not alone. The Family Support Worker is there to provide this supportive role in their lives
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Making Common Cause
We strongly advise people affected by mitochondrial disease to join one or more of the above charities. You may not meet another sufferer of mitochondrial disease but fellowship can still be gained from meeting with others affected by other metabolic or neuro-muscular diseases. Even though the underlying causes are different, many of symptoms and the resultant problems encountered are similar
Also Mitolinks believes co-operating and uniting with others with differing neuro-muscular and metabolic conditions enables a greater impact on the national scene. Like it or not the medical charities compete for attention. The MDC and CLIMB between them, represent a variety of neuro-muscular and metabolic conditions. Each condition, on its own, is simply less numerically strong than better known medical conditions and therefore cannot compete for attention with the bigger charities. It is only through uniting with others with neuromuscular and metabolic conditions that we can be effective.
The charities need members. Numbers count when talking to government. |
Muscular Dystrophy Association-USA Mito-site
The website of the Muscular Dystrophy Association of the USA includes an excellent section dealing with mitochondrial disorders |
United Mitochondrial Disease Foundation (UMDF)
This an American based society but has members in many countries. Its website is an excellent source of reliable information.
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Muscular Dystrophy Associations throughout Europe.
The European Alliance of Muscular Dystrophy Associations (EAMDA)lists the contact details of member associations across the continent. |
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