Forming a not-for-profit organisation

nicholas

Forming a not-for-profit organisation???Along with Alzheimer???s disease, Parkinson???s is expected to surpass cancer as the second most common cause of death by the year 2040.??? CSIRO, August 2002I am forming a not-for-profit organisation called the Lewy Body Foundation (LBF) The LBF will campaign government, of all levels, for adequate funding of Lewy Body Dementia and related illnesses. However, without five members and a committee - President, Vice-President, Treasurer and Secretary - I am unable to register it, ask for donations or fund research. The roles will be entirely voluntary, and any effort put into the Foundation will be appreciated. I have committed to cover all costs of incorporation and ongoing administration myself so please understand this is not at all my motive. So what do you want?Nothing. I am not asking anything of you but to consider who you know who might be interested, and forward this note to them. Until we are registered as a foundation and can receive donations like a charity, I have started this website: www.lewybodyfoundation.com Any feedback on the website or advice would be most appreciated.What is Lewy Body Dementia?Lewy Body Dementia (LBD) is a neurodegenerative brain disease. It is both chronic, in it persists over a long period of time, and progressive, since its symptoms worsen over time. Whilst largely unknown, it is the second most common form of dementia to Alzheimer???s disease. It is estimated up to 82,000 people have LBD in Australia alone.Simply put, if you were to add Alzheimer's (cognitive/mental issues) with Parkinson's disease (motor/movement difficulties) you would have Lewy Body Dementia. It is generally fatal within 8 years of diagnosis, and 20% of those diagnosed are under 50. It is often misdiagnosed as Alzheimer's or Parkinson's disease. There is no known cause. And no cure.Aren't there organisations out there that address this?No. There are organisations for the more common neurodegenerative diseases that Lewy Body Dementia is likened to, Alzheimer's and Parkinson's, but there is no organisation like it in Australia. There is, in fact, only two other in the world. I am in the process of drafting a joint statement and forming an alliance with the US and UK organisations. If you would like to see what they are doing, which is more at the grassroots level rather than directed at the government, please visit the Lewy Body Dementia Association site in the US, www.lewybodydementia.org The Lewy Body Foundation would seek to supplement the work of the Australian Parkinson's and Alzheimer's Associations who currently support a number of Lewy Body Dementia patients and relatives as best they can. Thanks for your time.Nicholas TaylorPh. 0410 288 700[email]nicholas@lewybodyfoundation.com[/email]