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jfkoc
Posted: Sunday, March 5, 2017 3:04 PM
Joined: 12/4/2011
Posts: 18855


Michael Ellenbogen is requesting a meeting with Pres Trump in two weeks when he will be in DC for the AA. I am writing and calling in his support. I hope you will consider doing the same. Whitehouse # 202-456-1111 email       president@whitehouse.gov

Here is some information on Michael which I found helpful in making my request:

 Advocacy experience

         UsAgainstAlzheimer’s - Dementia Advisor

         Member of the Dementia Friendly America National Council

         Health Power - Editor and Advisor and Global Expert on Alzheimer's, Dementia and Caregiving

         Caring Advocates - Advisory Board

         DEMENTIA ACTION ALLIANCE (DAA)  Advisory Council & Founding Member of the Leadership Board

         Keeping Us Safe – Executive Vision Committee   

         Dementia Society of America (DSA) - Founding Member of the Advisory Board

         CCAL Board Member & Advisory Board  www.ccal.org 

         Alzheimer Association Delaware Valley Chapter Early Stage Advisory Group   

         Alzheimer’s Association National Early-Stage Advisory Group (ESAG) out of national headquarters in Chicago   

         Alzheimer’s Association Alzheimer’s Ambassador Program

         Working relationship with multiple CEO/Executives of diverse organizations worldwide

Public speaking engagements

         Speaker at Future Imperatives in the Global Fight Against Alzheimer’s and Dementia ½ day Conference, Geneva – this was a follow-up meeting after the WHO conference driven by CEOi/AARP/ARUK

         Speaker and panelist at the First WHO Ministerial Conference on Global Action Against Dementia (Geneva, 16-17 March 2015)

         National Alzheimer’s Project Act (NAPA) – The Advisory Council on Alzheimer's Research, Care, and Services 

         Presenter for the Alzheimer’s Association Early-Detection Alliance

         Guest speaker at Harvard College Alzheimer’s Buddies (including Q&A)

         Dementia Society of America

         Pennsylvania State Plan for Alzheimer's Disease and Related Disorders Forum

         AARP International Conference - Changing Global Care for Dementia (including Q&A)

Achievements

         Had my Dementia Friendly Vision published in the Journal of Psychology and Clinical Psychiatry

         After working many months on the 'Purple Angel World Logo' project I was selected to be one of the 50 Purple Angel Ambassadors from around the world.

         Leading the Purple Angels dementia awareness movement in the U.S. and other parts of the world

         In April 2013 I was appointed to the Pennsylvania Alzheimer’s Disease State Planning Committee

         First person who is living with early stage Alzheimer’s in the US who has participated regularly in the public in-put sessions of the National Alzheimer’s Project Act Advisory Council meetings

         First US citizen to be in Alzheimer’s disease International’s World Alzheimer Report

         I completed a successful book highlighting my struggles, geared toward people living in the early stage of the disease, caregivers, family members, and physicians who deal with this debilitating disease

         Some of my writings have been read to Congress, and I have had two letter’s added to the Congressional Record


grandmalynda
Posted: Sunday, March 5, 2017 6:29 PM
Joined: 12/3/2016
Posts: 374


Thank you so much for this post.  Michael is a fabulous advocate for all pwd's and I will support him in any way possible.

--Lynda


llee08032
Posted: Monday, March 6, 2017 5:21 AM
Joined: 5/20/2014
Posts: 4405


Thanks for sharing this. I have been thinking  about Michael and miss him on our board! I can personally vouch that he goes above and beyond in trying to help other PWD.

Are we to advocate for President Trump to meet with Michael when we call and email?

jfkoc
Posted: Monday, March 6, 2017 9:11 AM
Joined: 12/4/2011
Posts: 18855


I said:

I hope you will accept the request of Michael Ellenbogen he has requested. Michael, is knowledgeable advocate and a person diagnosed with Alzheimer's Disease. Currently 1 in 3 seniors dies with Alzheimer's and that number is set to increase. 


alz+
Posted: Monday, March 6, 2017 10:50 AM
Joined: 9/12/2013
Posts: 3560


JFKOC

thank you for this.

I will gladly call white house for this reason. Trump's father had dementia and from how things are going I think Trump ought to have someone with him when Michael visits who can consider the president's current  condition.

Michael is at ease around other high  power people, he will make our case gallantly as usual.

Go tell them Michael!


Michael Ellenbogen
Posted: Tuesday, March 7, 2017 12:27 PM
Joined: 11/30/2011
Posts: 3413


Wow, Thank you so much Jfkoc. I have actually made some progress on my request. It is at the VP office and I am waiting for a call from the White House scheduling office. It will take a lot to make this happen as I have had so many politicians try to reach out t to the office for me.   


jfkoc
Posted: Tuesday, March 7, 2017 12:48 PM
Joined: 12/4/2011
Posts: 18855


how about some more calls today...
Veterans kid
Posted: Tuesday, March 7, 2017 1:18 PM
Joined: 10/17/2014
Posts: 1239


I just got off the phone calling in my support

Email is done as well!

Godspeed, my friend!

Always be VK 

 

 


obrien4j
Posted: Friday, March 10, 2017 11:08 AM
Joined: 11/18/2016
Posts: 451


Michael- that is awesome. I would love to know how to get involved- it gives me a "purpose", which I am searching for, when I retire. My local chapter has NOTHING- no support groups, nothing for PWD. I thought, or continue to think about creating a group, but then the idea and responsiblity overwhelm me. Besides nominating myself- what other ways can I get involved to be an advocate? I am clueless...
Mimi S.
Posted: Friday, March 10, 2017 4:50 PM
Joined: 11/29/2011
Posts: 7029


Jean,

I'm sure Michael had a different path.  Since I was involved with an aunt diagnosed, I had been contributing yearly to the Alz. Assoc. After I was diagnosed, perhaps I wrote a larger than usual check.  Anyway, one day I got a call asking for more. I responded that I could give no more but that I was recently diagnosed.

I couldn't believe, but from the mouth of what I hope was a volunteer, came the words: but you don't sound like you have Alzheimer's.  And so I educated her on Early Stage and expressed my desire to get involved.  I didn't hear anything for quite a while.

Finally I did get a call from the head of my local office and things progressed from there. 

Can you call the person in charge of your local chapter?  If that doesn't work, call the help line 1-800-272-3900 and ask to speak with a Care Consultant. Explore with her how you can get involved.

I formed my own support group and then when it was an actuality I contacted the local office and became official.  Unfortunately because of non-cooperation of care partners some of the PWDs could not get to the group.  Two of us were not enough for a group.

Admin has put up on the I Have Alz. and Younger Onset a link to Living Well.  It's near the top, not down with the usual.  I found it interesting.  The coping with diagnosis might be of interest to you.  One of the person on a video spoke about still being able to learn. I remember discovering that at a final conference after my neuro-psych.  A shout of joy: I can still learn!!!

I forget when the annual DC form is, soon. It might be too late, but I would advise going. To me, meeting others with the disease was always the best part. For others, meeting and speaking with members of congress and/or staff was a highlight.


The_Sun_Still_Rises
Posted: Friday, March 10, 2017 6:14 PM
Joined: 7/24/2015
Posts: 3020


obrien4j wrote:
Michael- that is awesome. I would love to know how to get involved- it gives me a "purpose", which I am searching for, when I retire. My local chapter has NOTHING- no support groups, nothing for PWD. I thought, or continue to think about creating a group, but then the idea and responsiblity overwhelm me. Besides nominating myself- what other ways can I get involved to be an advocate? I am clueless...

---------------------------------------------------

I would suggest considering getting involved in Dementia Alliance International or DAI, they always looking for people help.  Kate Swaffer a great contact...but also make note of it in your membership application. 

You can read up on their site how be nominated their Board. 

Michael kind of do his own thing.  But basically, just by virtue of being dx'd...you become the face of Young Onset.  Although Dementia Rights Advocates have been around a long time, it still very much a grass roots effort.  So it real need people just start where they at and do what they can. 

My personal suggestion is, however, before you run off do this...(although I am VERY excited seeing you excited)....is get know all the other PLWD online (that not on here)...so when you give voice us....you giving voice the majority of us.  They a great circle of people....a large circle. 

<3

 



Michael Ellenbogen
Posted: Saturday, March 11, 2017 9:43 AM
Joined: 11/30/2011
Posts: 3413


obrien4j if you want to know more reach out to me privately as I have offered before. The best advice I can give you is to go right to the source for your information. Do not listen to those around you as most have it wrong. The same goes for the media. Reach out to them directly as you will be surprised by what you learn. If you follow that rule you will become one of the best and unlinked by most. It's the mission that counts not the friends you think you need to make. It is overwhelming and you need to grow a thick skin. You need to stand by your principles as long as you know they are accurate. Never be afraid to admit you were wrong if you truly are. None of us are perfect living with this dam disease.  If you become successful you will also become a target. Don’t let that interfere with what you are doing but stay on focus with the goals you have set. Good luck    


Michael Ellenbogen
Posted: Saturday, March 11, 2017 9:47 AM
Joined: 11/30/2011
Posts: 3413


Oh and one last thing shoot high and go after the high hanging fruit. Nothing is impossible if you set your mind to it. It just takes persistence and reinventing yourself when you may first fail. 


jfkoc
Posted: Saturday, March 11, 2017 9:55 AM
Joined: 12/4/2011
Posts: 18855


"If you become successful you will also become a target."

You will run into those who can not tolerate your success...they see you as a threat to their position. It makes one wonder what their goal really is...the spotlight or progress.


Michael Ellenbogen
Posted: Saturday, March 11, 2017 10:13 AM
Joined: 11/30/2011
Posts: 3413


You will run into those who can not tolerate your success...they see you as a threat to their position. It makes one wonder what their goal really is...the spotlight or progress. "

 

 

I am not sure that is why it happens. In my opinion it because they are uneducated on the issues and most around them agree with each other therefore thinking you are wrong because you are different. Most learn from each other what I consider bad information which is really sad. I have found most folks have it completely wrong when it comes to Pharma, research and AA. They just don’t really understand it and because of that they fight you on the issues. I speak to the top and heads of the companies to truly understand all the details before I support something. It takes a lot longer but it also gives me great incite to were the real problems are so I know what I need to fight for and change. If you don’t know the whole story you cannot fix the problem. I am sure there are a few that want to be in the spotlight but I think education is the real issue.

 

Speaking of spotlight I have always tried to stay out of the spotlight and most of the work I do is one on one. I also just don’t focus in the US but also the world. I have more respect from the UK government then my own. And that is because they want to be dementia friendly. But I can tell you that will change before the end of the year with what I am doing now. 

I even helped start the first demenati group in Africa under ADI now. 


JSMod
Posted: Sunday, March 12, 2017 3:26 PM
Joined: 6/27/2011
Posts: 4


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