Australian Mitochondrial Disease Foundation
'Stay in Bed Day'

This Weeks Episode of Home in WA

Contact:
AMDF

Website:
http://www.stayinbedday.org.au/

Phone:
(02) 9488 8058

Address:
6 Burdekin Crescent
St Ives NSW 2075

Forty years ago John Lennon and Yoko Ono did it for peace and this year you too can stay in bed for a great cause. August 22nd is ‘Stay In Bed’ Day to raise money for research into Mitochondrial Disease – a genetic disorder that robs you of energy and often makes it difficult just to get out of bed.

So, register at stayinbedday.org.au, get a few people to sponsor you and Sunday Week, stay in bed all day.  Or…get down to the Norfolk Hotel Basement in Freo that same night and catch Roby and friends when they have a very special ‘Pyjama Party’…to raise much needed funds. All proceeds go to AMDF Western Australia. ...so get down to the Norfolk - Tickets are available at the door for only $25 or you can buy them from Kul Kul, 435 Hay Street Subiaco or ring 9388 7900.

So do your bit next Sunday....get sponsors and raise some money for a really good reason and do your bit to help…..

Stay in Bed Day
Sunday, August 22nd
www.stayinbedday.org.au

FACT SHEET: MITOCHONDRIAL DISEASE


  • Mitochondrial disease is a debilitating and potentially fatal genetic disorder that robs the body’s cells of energy and can adversely affect many parts of the body.

  • Mitochondria are the energy source in every body cell. Often called the cells’ powerhouses or batteries, mitochondria transform food to produce 90 per cent of the energy needed by the human body to function, sustain life and support growth.

  • Mitochondria are most plentiful in tissues that require a lot of energy to function; the disease therefore causes most damage to the cells of the muscles, brain, heart, liver, ears and eyes.

  • Depending on which parts of the body are affected, sufferers may experience muscle weakness and pain, loss of motor control, gastrointestinal disorders, swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, strokes, seizures, visual or hearing problems, lactic acidosis, developmental delays, intellectual disability and susceptibility to infections.

  • There are very few effective treatments and no cure for mitochondrial disease and much uncertainty regarding the progression of disease/symptoms and patients’ prognosis.

  • Mitochondrial disease is difficult to diagnose due to the widespread range, type and severity of symptoms and its varying onset and impact on patients’ lives (from none to severe); there are more than 100 known subgroups of mitochondrial disease.

  • Mitochondrial disease was thought to be rare (one in 20,000 people), but recent research shows that up to 90,000 Australians (1 in 250 people) may carry the genetic changes that can cause mitochondrial disease. Many of these people are symptomatic but undiagnosed or misdiagnosed, or are at risk of developing the disease or passing it on to their children.

  • Every year at least 50 children born in Australia will develop mitochondrial disease during their lifetime (estimated 1 in every 5,000 births).

  • The disease can affect both children and adults; multiple family members are often affected. Adult onset is becoming more commonly diagnosed, when the increasing load of repeated mitochondrial impairment (cell injury and cell death) over time starts causing organ systems to fail and symptoms become evident.

  • Most patients have a genetic mutation in the mitochondrial or nuclear DNA. The condition can be inherited from the mother or from both parents, or can arise as a genetic mistake at the time of conception.

  • The Australian Mitochondrial Disease Foundation was set up in 2009 by family members, friends and doctors of sufferers to fund essential research into the diagnosis, treatment and cure of mitochondrial disorders, and to support affected individuals and families.

  • Fundraising activities range from school pyjama parties, fun runs and movie nights to the AMDF’s major national fundraising activity, Stay in Bed Day, held each August.

  • People can raise money by staying in bed on 22 August 2010 and being sponsored via www.stayinbedday.org.au, hosting a brunch pyjama party in return for donations, or giving online to the Australian Mitochondrial Disease Foundation at www.amdf.org.au.