My name is Michael Ellenbogen. I am reaching out to you because I know you will make a difference in my life.
I am a writer. I am a husband. I am a father. I was a high level manager. In 2008, I was diagnosed with Alzheimer’s disease after struggling to get a diagnosis since my first symptoms at age 39. As one of 5.4 million people living with this debilitating disease, I currently live every day to make a difference. In fact, I am now an advocate for the education and eradication of this disease.
I would like to try to change the perception of Alzheimer’s disease to include much younger people as the face behind Alzheimer’s. I feel that this will get the younger generation, and many others, now on the sidelines, to become involved. I am not trying to disrespect older people, but I am trying to use marketing to our advantage.
I would like to ask you to join the Michael Ellenbogen Movement. I have created a forum which is not intended to take you away from your existing forums. In fact, I encourage you to stay connected to your other forums, so you can be our connection to others. This is how we will become very powerful because we will eventually have the power of all the blogs and forums. After awhile, once we grow, I will make a request that we all work as a team to make a difference. Please help me my joining today and start spreading the word to all forums, family and friends. Please click on the link below for more information to the new forum.
We are looking for many volunteers to help this kick off. With all of your help we will become one very strong team across the world. Below is a list of my goals from my site. While I know there are many, I am in hope that my legacy will continue through volunteers and we will eventually eliminate this disease.
Michael Ellenbogen Movement Goals
I not only want Alzheimer’s to end with me, but I also want to reshape the world around the disease.
To accomplish this we need to do the following:
Solicit for Volunteers – Tech savvy people, moderators, project managers, people with marketing experience, Healthcare personnel and anyone else who has a passion to fight for this cause
Create a single portal for all communications - Make one single place where people can go for information, blogging, forums and the latest information related to Alzheimer’s disease. Also, access to Twitter, Facebook, and inbound and outbound RSS feeds.
Website & Michael Ellenbogen Movement awareness - Find ways to utilize free marketing so others will know who we are. Take advantage of technology and creative volunteers.
Advocacy coordination to key email addresses - Blast government officials, congressmen, senators, NIH researchers, and Alzheimer’s support organizations with personalized emails from our supporters.
Awareness of YOAD - Change the perception of who get Alzheimer’s – Young people, even those in their early 30’s and younger get it. Use commercials, billboards or posters in key places to get the word out.
Soliciting people to help with funding – Identify good negotiators, marketing, and PR people.
Soliciting famous people - Contact stars, famous people and CEO’s to join the movement.
Soliciting media - Identify media outlets that will help cover the story of this movement through the use of TV, Newspapers, Magazines and Radio.
Awareness of outcomes for AD – Currently, people who have Alzheimer’s cannot be cured. There is no way to slow the progression of the disease, and most die in 4 -8 years of diagnosis. While these two statements are strong I feel this is what it’s going to take to reach younger generations and others to jump in and help – we cannot beat around the bush like others do. It does not seem to work.
Increase research – In order to eradicate this disease, we need to find more sources of funding and redistribute current government funding to bring Alzheimer’s to a level comparable to other disease research.
Make Government Grant programs free, fair & balanced – Some researchers using Government research grants are discriminating by age and minorities because of rules being set forth by both the provider and the receiving researcher. This will prevent the formation of an accurate picture of this disease. For example, black people are twice as likely to get Alzheimer’s. Why?
Physician education - Doctors need to not only be better educated, but they need to commit to a more timely diagnosis so that patients can collect the benefits they deserve and to which they are entitled.
Remove the negative stigma associated with the disease. - Too many people are ashamed to let others know that they have this disease. They act like they did something wrong to get it. Now is the time to join me, come out of the closet, hold your head up and be proud in making a difference in how we are looked upon by ourselves, not just others.
Meaningful Job creation - Create meaningful job opportunities for people who have Alzheimer’s.
Eliminate the term Caregiver - Come up with a new term for the word “caregiver” when used for people in the following stages- 2: Very mild decline, 3: Mild decline and 4: Moderate decline. We find it very demeaning and do not like being treated like a child. Help us where we are weak, but don’t give up on us just because we have now been labeled with Alzheimer’s.
Law Enforcement Education – Educate police on how to deal with Alzheimer’s patients.
I would like to leave you with a few quotes by - Margaret Mead,U.S. anthropologist (1901 - 1978)
"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has."
“It may be necessary temporarily to accept a lesser evil, but one must never label a necessary evil as good.”
“Sooner or later I'm going to die, but I'm not going to retire.”
I implore you for your kindness and passion to help me make a difference in the world. Let’s make Alzheimer’s end with me. Thank you so very much for hearing my story.