A Person With Alzheimer's Speaks Up For Those That Cannot
Organized by: Michael Ellenbogen
My name is Michael Ellenbogen and I need your help in order to continue my mission to help people with dementia. I want to continue to educate people, change policies and break the stigma about having Alzheimer’s/dementia.
At age 39 I was high level manager for a fortune 500 company. Although I knew then there was something wrong, it took 10 years to be given a diagnosis of Alzheimer’s disease. In the meantime I was fired from my job and lost all of the benefits that I should have been entitled to.
Alzheimer's Disease has no cure or effective treatment. Over 5 million Americans suffer with Alzheimer's Disease, about 200,000 are under the age of 65. When you add in other forms of dementia, the total is 6.8 million Americans affected. Many of these people cannot speak up for themselves. There are no survivors to rally for the cause.
Because I am a workaholic, I had to find something to give me a reason to continue living. Since I am an out-of-box thinker and very good at getting things accomplished I realized that advocating for people with Alzheimer’s would be my new calling. Over the past 5 years I have become world renowned for this cause. However, this work comes with expenses that I can no longer afford on my own.
In the last 5 years I have volunteered an average of 3600 hours of my time per year and spent about $12,600 each year for expenses related to advocacy. During this time, I have accomplished many things and received much encouragement to continue.
My three most significant accomplishments are:
• I convinced the Department of Health and Human Services to include someone with AD on the advisory committee for the National Alzheimer's Project Act (NAPA). I have been the only person living with dementia to speak at all of their public input sessions since the beginning.
• A letter I wrote was added to the Congressional Record
• I was appointed by the Governor of Pennsylvania to serve on the planning committee for the PA State Plan for Alzheimer’s and other related disorders.
Through my participation in these activities, I have also created a network of over 6,000 individuals and engaged in multiple advocacy opportunities to elevate the cause of Alzheimer's/dementia disease.
Attending NAPA meetings in Washington, D.C. four times a year is very expensive. I also need the money to attend other conferences that are very important to raise awareness and continued networking. These conferences are listed below, although their locations change from year to year. This year was the first time I had to cancel because I could no longer afford the cost of attending. Without financial help from you and others, I cannot continue this important mission. I can promise you that your contributions will be used only to cover expenses, and that I will still contribute my own funds to cover the costs as needed.
Alzheimer's Association Advocacy Forum
Alzheimer's Association International Conference (AAIC)
Alzheimer's Disease International (ADI)
American Society on Aging
The average cost for each conference is about $2,500 in travel expenses, not including the cost of the conference. This is very hard for a person who is living on Social Security and not tied to any organization. I work with all organizations related to dementia and I am only loyal to the people living with this disease. Many can vouch for me that I cannot be influenced by any one organization. I hope you see a value in what I have done and will continue doing.
If I should be so lucky to get more than I need, all extra money will go to dementia organizations. While I have been given a death sentence, I will try for as long as possible to change the world so you and your families will have a fighting chance should you become impacted by this disease. We all will be touched by this in our lifetime. Please help me make my and your dreams come true: A world without Alzheimer’s/dementia.
P.S. I am more than happy to speak to anyone who is serious in helping me. Please feel free to reach out to me through my website and send me an email. http://michaelellenbogenmovement.com/
Please copy and paste the following link to a video interview with Lori La Bey about this fundraiser.