Sleep in with Celebrities on , Sunday 22 September, Stay in Bed Day To

Media Release 5 September 2013

Sleep in with celebrities on Stay in Bed Day , Sunday 22 September, to help cure energy-sapping genetic disease

For most of us, a Sunday sleepin is an inviting prospect or a guilty pleasure, but to the thousands of children and adults with the debilitating genetic disorder mitochondrial disease, staying in bed while others are out enjoying life is about mustering enough energy for living.

On Stay in Bed Day, Sunday 22 September, Australians are being urged to buy a guiltfree sleep in alongside celebrities like TV personality/landscape designer Jamie Durie , actors Kate Ritchie and John Howard and cricketer Pat Cummins to help the Australian Mitochondrial Disease Foundation (AMDF) support sufferers and find a cure.

Schools around Australia have been practising for Stay in Bed Day with pyjama days to support schoolmates with mitochondrial disease (mito), which has recently been in the public eye in a heartwrenching storyline on TV’s Home and Away, starring Kate Ritchie and Piper Morrissey.

Mito funrun teams around the country have also been pounding the roads in bright green Tshirts to raise funds and awareness and commemorate loved ones who have died from the disease. Sydney’s Team Mito will even postpone their sleepins to participate in the Sydney Running Festival on 22 September.

AMDF chief executive Sean Murray said mitochondrial disease is a devastating and potentially fatal disorder for which there are as yet few effective treatments and no cure.

“Mitochondria are the powerhouses in our cells that convert food and oxygen into energy, so mitochondrial disease impairs the body’s ability to power and sustain muscles and major organs like your brain, muscles, heart, liver, inner ears and eyes, causing multiple organ dysfunction or failure,” Mr Murray said.

“Mito can cause any symptom in any organ at any age and often affects multiple family members. It was originally thought to be very rare, but we now know that 1 in 200 people – more than 100,000 Australians – may develop mito in their lifetime.”

Depending on which parts of their bodies are affected and to what extent, sufferers can lose their sight or hearing, be unable to walk, eat or talk normally, have strokes or seizures, or develop heart problems, liver disease, diabetes, or respiratory or digestive problems.

“Needing to stay in bed to rest and recharge is a common outward symptom of mitochondrial disease, so we’re asking people to support sufferers by buying sleepins for themselves or loved ones at stayinbedday.org.au.

“For a donation of $20 or $50, you receive a Stay in Bed Day Do Not Disturb door hanger to ensure a guiltfree hour in bed or an indulgent allmorning liein. Sleepins can be bought at any time, which is perfect if you can’t join the mass sleepin on 22 September or want to give a feel good gift for a special occasion such as a birthday,” he said.

In addition to buying a sleepin, there are other easy ways to help cure mito: Be sponsored to stay in bed on 22 September. It takes just a few minutes to register and create an online fundraising page at the Stay in Bed Day website; then contact family, friends and colleagues to ask for their support. Sponsor others to sleep-in. Search for Stay in Bed Day supporters – including many mito sufferers – at www.stayinbedday.org.au . Host a pyjama party , a John & Yokostyle bedin, brunch in bed, or even a relaystyle event to keep the bed occupied all Stay in Bed Day. Ask bed mates to make a donation or buy a sleepin voucher for the privilege of joining in. 2/

Sleep in with celebrities on Stay in Bed Day, 22 Sept, to help cure energy-sapping genetic disease 2

In addition to raising funds, Stay in Bed Day is about making the public and doctors more aware of the symptoms of mito to ensure proper diagnosis and healthcare, according to Mr Murray.

“Many people with the genetic mutations implicated in mito are symptomatic but undiagnosed or misdiagnosed, some are not yet symptomatic, and others are unknowingly at risk of passing the disease on to their unborn children,” said Mr Murray, whose family is affected.

“One Australian child born each week – 50 children every year – will develop a severe or life threatening form of mitochondrial disease and half will die in childhood, making mito the second most commonly diagnosed serious genetic disease after cystic fibrosis. A further 20 Australian children born each week are at risk for developing a mild form of mitochondrial disease.”

Newly appointed ambassador Jamie Durie said he wanted to get involved with the AMDF to help raise awareness of mitochondrial disease.

“Like me, most Australians probably never hear of such a disease until someone they love is affected. My life has now been touched by the heartbreaking mitochondrial disease, which has physically affected my close friends' lovely little girl. The disease has not only affected their daughter but has impacted the whole family. Our health and vitality should never be taken for granted,” Mr Durie said.

Kate Ritchie , who will be sleeping in on Stay in Bed Day, has been delighted with the increased public interest in mito as a result of Home and Away . Visits to the AMDF website (amdf.org.au) have skyrocketed since midJuly when her character, Sally Fletcher, broke the news of her daughter’s illness, and social media has been buzzing.

"My return to Home and Away was always dependent on having a worthy storyline to sink my teeth into. What I didn't realise was that it would prove to be so rewarding. The positive response to the journey of Sally and her daughter, Pippa, has been overwhelming. Not only from families already touched by mitochondrial disease but from thousands of others who, like me, had never heard of it. I can only hope the awareness this story has created will continue to have a positive followon effect when it comes to further education, research and donations,” Ms Ritchie said.

AMDF Ambassador John Howard is also raring to go for Stay in Bed Day, which he will spend in Canberra: “I want to help get people with mito disease running and dancing and jumping, just pumping...full of energy, with the verve to swerve like they deserve!!!,” he says on his Stay in Bed Day fundraising page.

“Lying down to help others stand up and live! What a way to recharge your batteries!! Mito disease robs many children and adults of the energy to survive and thrive. Help us revive their lives by sponsoring or supporting Stay in Bed Day 2013.”

Thanks to previous Stay in Bed Days, the AMDF has funded several major research projects, an Australiawide mitochondrial patient database and priority access to a new NextGeneration DNA Sequencing Facility to enable faster, less expensive and more accurate diagnoses of mito.

The AMDF also operates a telephone helpline and website, has local support groups including a Facebook group, and runs information sessions for patients, GPs and specialists.

Stay in Bed Day is the finale of Global Mitochondrial Disease Awareness Week (1521 September 2013; gmdaw.org), which includes education and information sessions, fundraising activities and support and advocacy initiatives. A successful Australian initiative that began in 2009, Stay in Bed Day is now also run in New Zealand, the United States, Canada and the UK.

For media information or interviews with experts or families affected by mito , contact Moore PR: Carol Moore, 02 9560 2826, 0402 382 363, [email protected] or Lisa Burling, 0429 976 718, [email protected]