A young father who will soon be unable to speak, swallow or breathe is the face of a new national campaign to raise awareness of motor neurone disease (MND) and funds for the MND Research Institute of Australia (MNDRIA).
Adam Regal of Kiama, NSW is living with MND, an unstoppable and fatal disease that kills two Australians every day. The average life expectancy is just two to three years after diagnosis.
'MND is such a brutal disease for which there's no treatment or cure, yet. Research is the only tool we have to understand and overcome MND," says Mr Regal.
'At the moment MND is affecting just my legs, but in time I'll be unable to complete the simplest tasks like hugging my kids or dressing myself."
The national campaign to run in May will span TV, radio, online as well as an in store promotion through corporate sponsor, Harvey Norman.
The campaign reveals the reality of living with MND and appeals to the public to put a price on the ability to perform everyday tasks like drinking a cup of coffee or saying -I love you' to family: 'Put a Price on it. That's your donation."
'Devastating doesn't begin to describe the effects of MND. It may be too late for me, but I'll do everything I can so future generations never have to go through this. Research provides us with the hope for a future without MND," says Mr Regal.
While researchers are making inroads, funding is still needed to better understand MND and move towards discovering an effective treatment.
Donate to ENDMND: www.endmnd.org.au
More information about this campaign: www.mndaustralia.org/putapriceonit
Key Facts about MND in Australia:
- MND is a progressive, terminal neurological disease
- In most cases the cause is not known and there is no effective treatment and no known cure for MND
- People with MND progressively lose the use of their limbs and ability to speak, swallow and breathe, while their mind and senses usually remain intact
- Average life expectancy is 2 to 3 years after diagnosis
- Around 2,000 people have MND in Australia
For more information about MND visit: www.mndaustralia.org
Adam Regal is a 31-year-old father of two who is living with MND in Kiama, NSW
Question: What do you hope to achieve from the current MND awareness and fundraising campaign?
Adam Regal: I just hope that the profile of Motor Neurone disease and the devastation that comes with a diagnosis can be changed. Currently there is no effective treatment and no known cure. The campaign tells it like it is. There is a price that comes with MND and the ability to live with it. Holding a cup of coffee or being able to dress your self are small things we take for granted; that I once took for granted. Hugging a loved one. These everyday things are slowly taken away as progression spreads throughout the body. The ultimate goal would be for an end result to change. Life. To stop progression and bring much needed awareness and funding for research into the public eye. Research is the key the only way we can have a future without MND is through research. www.endmnd.org.au That is where it will end.
Question: What was it like to film this campaign?
Adam Regal: The campaign was easier filmed then what I thought it would be. Bernice the mastermind behind the campaign is a fellow sufferer of MND. Her progression is quite rapid and when she asked if I could get involved I just couldn't of said no. Bernice's voice is starting to deteriorating quite fast so it's hard for her to speak. Her drive to make a difference and look for a future without such a cruel disease, like other MND patients made it a lot easier to film.
Question: Can you talk about your experience with MND?
Adam Regal: I was diagnosed on the 11.12.13 at the ripe old age of 30. I had just lost my father from MND only 12 months prior and an uncle 10 years prior to that; they too where in the prime of their lives. While 90% of cases are sporadic (meaning anyone can get it) my case came under the other 10%.
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