2014 Public Comments on the National Plan for Alzheimer's Disease and the National Alzheimer's Project Act

07/01/2015

Table of Contents

DECEMBER 2014 COMMENTS

NOVEMBER 2014 COMMENTS

OCTOBER 2014 COMMENTS

SEPTEMBER 2014 COMMENTS

JULY 2014 COMMENTS

JUNE 2014 COMMENTS

MAY 2014 COMMENTS

APRIL 2014 COMMENTS

MARCH 2014 COMMENTS

FEBRUARY 2014 COMMENTS

JANUARY 2014 COMMENTS


DECEMBER 2014 COMMENTS

DATE:  December 4, 2014

SUBJECT:  Anthem's Comments to CMS Advisory Council

Attached, please find Anthem's comments to the Advisory Council on Alzheimer's Research, Care, and Services. Anthem appreciates the opportunity to submit comments to the Advisory Council on Alzheimer's Research, Care, and Services. We share the Council's goals to improve health outcomes, enhance quality care, and meet the needs of individuals, their families, and caregivers who are facing Alzheimer's Disease or Related Dementias (ADRD). We look forward to working with each of you and showing how Anthem can help improve the lives of those living with Alzheimers. Please see our expanded comments detailing our work in this area.

Regards,

Erika Long,Senior Director, Congressional AffairsAnthem, Inc. Washington, DC 20004

ATTACHMENT:   12-4-14 Anthem-CareMore comments to CMS Advisory Council on Alz FINAL.pdf

Available as separate links:
Anthem Advisory Council Comments Anthem

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NOVEMBER 2014 COMMENTS

DATE:  November 13, 2014

SUBJECT:  What is like to be in my shoes when going to NAPA

Based on the question I believe I was asked by George, I decided to expand on it since I may have not painted the right picture an may have rambled a bit. I will share to attached documents that have been edited for me. This email will be completely unedited and you will see firsthand how my writhing and word finding has been impacted. I decided to give you an idea on what is like for me to plan and be at NAPA.

It all starts almost at the end of one of the meetings. I need to add it to my outlook otherwise I may forget about it. Once I get that information I will probably check it 3 or 4 different times just to insure I entered it right. I cannot begin to tell you how I want to select a certain date and instead I choose the wrong on. I can tell you I cannot understand that as I was such a perfections.

As we get closer to the date I search for hotels that I can get a better rate. I cannot begin to tell what burden it cost this is to me. My wife and I are not always in agreement in doing this and I feel so guilty of spending the money. When I final find a hotel I give the information to my wife to do the booking. I am so afraid that I will do something wrong or even book the wrong date or even misunderstand what they tell me. At one time in my life I would have made this trip all in the same day even though it would have been exhausting. Now days because of my location and in order to be of useful when I attend I need to arrive the night before so I am not stressed out. I am a little without the drive already. When I am finished the meeting I am so stressed and over whelmed that I would truly be a risk of driving all that way. My head feels like it is in the clouds and so unclear. I cannot begin to tell you how I need to unwind an relax after the meeting. It may be easier to possibly take the trains to get there but that would add to the cost and so much more confusion to me to try to interconnect with the trains and find the different ways to get to them from one train to the other and on time. I know this may be hard to understand as it is for me who once traveled regularly this way but when you cannot find the signs and get lost finding room numbers in a build then you would understand what all those other things do to you and the amount of pressure and stress it creates. ( on a separate note. I went to one of the congress buildings with a room number. I must have spent over a half hour or more trying to find it. I keep asking people to point me to it but somehow I just kept missing it. I cannot begin to tell you why. Thank god I finally ran in to someone that I knew and I asked them if they could personally take me there. I cannot begin to tell you how embarrassed I felt that I could not find my own way and do something so simple. Even with asking for people to point me I could not get there. It is even hard for me to understand why I cannot do that. That is why I am terrified these days to travel the trains, airports and metros but I will If I have to. I just know that it may have some issues along the way, Just hope they are not costly. I do real hat that to because I was so cost conscious in my life so that creates another level of stress)

As we get a month out I try to recall what new issues need to be addressed that may be important. Not necessary related to your topic. That would be tomuch to even begin to figure out. I also hat to be repetitive as so many tell me I should be. I believe you are all smart people and get it the first time. I cannot begin to tell you what pressure it si to try to stay within your time frame and I am not even sure I can even figure that out. I usually come up with so many topics and must limit it because of the time. I really have trouble prioritizing any more. To me they are all important. I believe part of the problem is in order to do that one needs to use executive functions that I no longer have or capable of using. I do believe they are there, just some broken path to the highway. And I do have the thought an times but just cannot seem to get them into words because as I try to think of what I am thinking to translate it stress me out that I forget what I am trying to write. It is crazy by far. It like I can only handle one task at a time and anything else is overload to me. Go figure, people say I had one of the most stressful jobs in my career and I thrived on it while others could not keep up with me or even handle it. It is so hard to write these days because I cannot remember what I said in the previous sentence. In fact as I write as sentence I make so many errors and by the time I go back at the end of the sentence to reread it I have so much difficulty trying to even know what the words were that I was using just for that sentence. I can take so much time trying to do that part. As I right and all I can say is thank good for Word. I can assure you if that did not exist today I would have died by now. It takes what I can no longer spell and make sense of it for me. Not always sure it using the write words. Sometimes my spelling is so bad and I cannot even being now to even spell the word for it to even help, so frustrating.

Now after probably many days of working on my speech I sent it to Emma Steel who is my editor all the way in the UK. She is the only person I could find that was willing to help volunteer her time. I had reached out to so many local like high schools, colleges and no one would give me just a little time to help in editing my work, not even a friend who was teacher who said she is to busy to help. All I wanted was one or two things a month. So many people offer there help but when it comes down to asking them for it they don't . Very frustrating for one that always help others when they were in need. I need it now so badly just the be heard as I am slowly losing my abilities and there is no one there for me. While I ask my wife on some It so much for her to handle as I have already added to burned on her already.

Emma does such a beautiful job especially with the poor information I give her. I could not even image what it must be like for her because I cannot even figure it out and I wrote it. Takes a special kind of person. She does all this from the goodness of her heart and I am demanding at times.

When I get the work back some time we need to go back a few time because some of points may not be there with the passion I like to put in this. Many times I just settle just because it's not worthy of the added work I would need to place on her and don't want to make her feel bad. Sometimes I amy go to someone else to help in order to get it closer to where I feel it should be. To many times in my writing I go over board and they all tell me to tone it down which I do many times but I have learned in life that on very important issues you need to be very direct if you want something done and it may need to be unpleasant if you tell the truth. While you folks my not believe it I hate it every time I must say something negative to you. It does hurt me inside and I continuously think about it as it may possible jeopardize the relationship we have. This works on me from before the meeting to weeks later. Even more because when I speak there are no comments made to even get a sense to how you feel. Any way once I final get my speech I send it to two trusted individuals who are in the dementia arena for guidance. Based on their comments I may change or remove something. I always want to insure I get it right since I may no longer be the best judge for that. These people have been extremely important to me in making all this possible.

If everything is okay with the speech then I need to get it ready so I can read it. First I change the font size to 18. Then I need to place unusual spacing in there so I can continue to read it and so I can stay focused. If I do not do this the words all look like they are shifting. I have trouble f keeping track of whereI am and if the font is to small I see the entire page of data coming at me as one, and cannot focus on a simple word. This what I have been able to figure out to help me cope and to be able to continue.

A few day before the meeting I must write an agenda of the places I need to be it with the complete address information. I will check that over at least 3-4 times to insure I did not error. If I am to meet with someone and have a phone number I will ask my wife to added to the cell phone so I have it in the memory. I can no longer do that. Kind of strange for someone who was responsible for Data and Voice for 70,000 people and was always a gadget person. I have become fearful of much of technology because I struggle to use it and cannot remember the mistakes I make so I don't do them again.

The day of or night before I need to get ready and pack what I need. I really rely on my wife to do much of it any more as I cannot keep it straight and remember what I need or packed. It also seems that I lost the ability to kind of plan to organize ahead matching cloths which I was once very good at. I would have never allowed my wife to just select something and be okay with it. I try to place as much as possible in the car as soon as possible so I don't have to many things I need to worry about when I leave. I even add my wallet to by brief case because I have ben know to forget it recently.

The day I leave I need to insure I am not in one of those days that my mind is all foggy. If that happens I would probably need to cancel the trip because I would not be able to drive that long under those conditions. I worry about that for while till I get on the long stretches of high way. When I do start out in my car I add the address to my GPS. From that point on till I get there I am on autopilot and following what it tells me to do. I don't always understand so I may take the wrong turn but the great thing about it is it will recalculate and get me there no matter how many mistakes I may make. Cannot even image what life would be like without it. I never even needed a map before. It was like I had built in GPS. While I am driving I am using ever once of energy that I have to try to stay focused and alert to what I am doing and the road and cars around me. I cannot begin to tell the amount of stress that is created when I drive now days. While I drive good it takes so much energy to do it. I feel like I am leaving my finger prints embedded in the steering wheel. I pretty much tune out everything else. Since I consecrate so much on the road, I sometimes have difficulty in following the road signs following on where to turn but that is okay because I have learned to not panic or get upset as much. That is the worst thing when can do with this disease is get stressed out because it leads to a serious snowball effect that can really make the mind go into a cloud and so unable to think. That is probably the most important think one can teach us. Not to panic and remain calm. I believe if we can master that it will go a long way. While I have driven to DC so many times it would sure be nice to look at place on the road as a landmark so I can gage about how close or far I am. Many place I see appear like I seen them while others look so new to me and cannot even understand. Sometimes all of a sudden I thing I know where I am going to only realize I am confusing it with some other road or place and it had nothing to do with where I am headed.

I was once the person that waited to run on fumes in the car before getting gas. Today I start to panic as I head to DC because I have gotten caught in paying super high prices for gas because I went to the wrong location. I still had tree bars but concerned of not being able to find the next gas station because I cannot follow directions. Because of that today I now try to fill up before Dc and I still pay more that I would like to but I do so many other stupid things to day that just keep adding to my cost of living because of lack of memory. It amazing how much one needsit and how we take it for granted until you lose it. When I final get there it is such a sense of relief to be able to check into the hotel. I call my wife to let her know I got there. Sometimes she calls me as in this last time because it took me much longer to get there and she was wondering why. Lots of traffic. In the hotel it can be easy or embarrassing when you need to fill the form out. I may not remember the type of car I have or even how to spell it. I do get my address wrong from time to time now. I usually don't understand all they tell me with their instruction on the internet and all the other things they say. I almost need a hotel for dummies on a piece of paper to read as I needed for what they tell me. Then I go to park my car which some time is challenge. I try to use the handicap spaces because It makes it easier to find, Just need to get to the right level. But as Leave the car and others are around me I feel so guilty by taking that spaces as they see me carrying all this luggage and walk without any issue. It has already happened where I could not find the car, so this method works.

When I get in the room I am very careful to put my items in one or two places in fear that I may lose track of them and forget them. It takes me many hours to finally unwind from that drive. Before I leave the hotel room I go thought some kind of a ritual every time. I feel all my pockets multiple times that I have all what I need. My instructions paper that also has the address, my room key and other things.I probably do this 2 -3 times because I may not remember I did it on unsure. As I am going down the elevator I may be rechecking again. I am not sure if it because I have total lost self confidence in myself or if its I forget I had checked.

Now that it's time for dinner I would like to really go somewhere else, but close to hotel makes it easier since I don't to risk getting lost and don't like driving when its dark. Especially when I am out of my comfort zone. When I return I call my wife to let her know I am safe so she does not worry. I could only imagine what goes through her head when I leave. But she wants me to keep my impendence for as long as I can even if that means there will be issues along the way. Sometimes she may need to guide me of setting up my alarm or the internet on my tablet. I do call the hotel for a wakeup call but like to have a backup in place. That night I try to prepare most of what I need for the next day so I am not forgetting something and to keep my anxiety down. The next morning I am head for my NAPA meeting and of course doing my rituals. I have even more to do because there is so much more I must take with me this time, like brief case with all my information, pens, business card.

This last time it was such a pleasure because someone was kind enough to offer to pick me up from the hotel. If not I would have receive a ride to the metro were I would have difficulty in adding money to the metro card. I really need someone to help me do that. Gas stations is even a problem some times because they are to quick and I am slow at replying. They need an AD mode to select. If I had the card then I only need to wonder if I get to the writ track. People are not so friendly when you are stopping them on the way to work as they are rusting for their train. Oh and the noise in those places really create a problem for me because I cannot filter the sound out so when the person is speak to me which I would have hard time understanding any way and remembering the noise only raise the bar for my failure.

Once I get to the sop if I am lucky to get off at the right one because I find the signs that tell you the stop a bit confusing at times. It's also hard to process as the train is coming into the station to read what is on the walls with the anticipation of trying to get off and all those people around me. Once I do get off it becomes a problem of asking lots of people to guide me so I can find my way at NAPA. I always ask two people because so many send you the wrong way. Not sure why people can just say they don't know.

Now that I made it I start to unwind because all this builds new stress. It makes it challenging going thru the metal detector because I don't always remember what I should remove. When I get up stairs I always feel a bit awkward because I cannot remember people's names and not always even sure of their face. Sometimes I think I met them but I did nt. I never had those issues in the past in fact most were surprised by my recall. I actually look forward to see people with name badges as that helps me a lot. Not that I am always able to read it as I am starting to speak with them. Can not multitask. I was a bit disappointed at this last meeting because they did not use the tags. When the morning gets started I am pretty good. It takes so much energy for me to sit there and try to focus and concentrate on what is being said. It's like using 110 present of all my power during that time. (I know this is hard to relate to but picture a moment in your life were it required full concentration and all your attention to insure you did something right. It feels like you are drained if you did it for a while. That is what happens to me most of my day as I do what most of you just easily cruise through the day) When you folks talk I do not necessarily hear everything you say. Well I guess I do but my mind doe not process it fast enough. So I am constantly trying to fill the gap for missed words and trying to make sense of it all. As I get back from lunch I am stating to feel the drain on my body which is huge by then. That whole afternoon I am fighting so hard to keep my body engaged to continue the process of absorbing what you are saying. I start to lose some of that ability but when topics of real interest come up I do get more out of it. You will me going out more often or standing. I am trying to keep myself calm as I am real having a very difficult time being there at that point. Just try to image that you had to concentrate on one thing all day. This time it was great because you made it so much better because of the technology. I could hear very one because of the new microphone. I cannot being to tell you what an improvement that was for me. Not so much when we lost the projector. I could not follow and had lost of difficulty. In fact those handouts are useless if you cannot even read the print. You may as well save the tress if it cannot be read. When the meeting stops it's like instant relief and I start to unwind. I do like to speak with many of you after. I am okay at that time but still winding down..

The trip back to the hotel is about the same but this time my head is a bit foggy. Ok for a short drive but not long.

The next day when I leave DC I always know I am going to get lost. There are two areas that I keep making mistakes and for the life of me I cannot remember were to go. One day I made the same mistake 3 times. This was during rush hour traffic. Can you image to turn wrong and it takes 20-25 minutes to get back to where you turned wrong original and you still not sure where to turn and turn the same wrong way again. That day I was almost ready to just pull the car off the road and call for help. Lucky something in my mind told me to take a completely different route for a while and this way the GPS final figured out a new way. Talk about frustrations that day. That is why I no longer drive home the same day. It is so much more relaxing to leave DC at 6:30 AM. I just want you to remember because so many of you are thinking why is this guy driving? I and many others who see me drive agree that I do very good. I need to keep an eye on that as I know it won't be long before I can't. But don't confuse ones driving capability to being lost or getting lost. That is hard for many to understand. I have been put in many recent situations where my reaction was needed to avoid any accident and I did better a normal person may have reacted. My wife was in the car. My reactions are still good. They may be slower then they were, but stall faster than many on the road without AD. My biggest fear is to be in an accident and it as absolutely not my fault, but because I have the AD someone may take action to make themselves feel better. After all mydoctor made the recommendation 6 years ago to stop because I would not know the day on my own. Just think how many good years would have been taken away from me. As you can see I did skip a lot from my trip but when I arrive home I finally have this huge sense of relief that I was able to make it to the meeting without any major issues. I continue to wonder if I can make the next or was this the last.

I must tell you I did not even think of all these things being that bad until I wrote this. Is even worse by far when something unexpected happens like getting lost or went down the wrong metro lane. I waste so much time an energy all day long just to correct mistakes.

I do believe I did much better in this wring than usual. I really spend a long time putting this together. About 11 hours and it seemed to be clear headed.

I cannot tell you how please I was that someone asked me a question at the last meeting.

I hope this more of a incite for what it is like to be in my shoes.

I always welcome your questions because that is the only way people will learn.

Thanks

Michael Ellenbogenhttp://www.michaelellenbogenmovement.com/

P.S, Whilethis letter was not edited I did share it with my editor who made the following comment.

Ironically this is the clearest I have seen you write in long time, your spelling is almost spot on, and so is you word usage etc.

Not sure why but I did spend a lot more time on it. I just hope you read it all.

ATTACHMENT:   What to say EVERYDAY Health.docx   Living with ADre-edit.docx   NAPA Speech 10-27-2014 Telep.doc

Available as separate links:
Alzheimer's Disease, My Daughter, and Me Alzheimer’s Disease, My Daughter, and Me
Living with AD cmtach201
NAPA Comments NAPA Comments

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DATE:  November 9, 2014

SUBJECT:  University of Cambridge- Meaghan Malloy

My name is Meaghan Malloy. I am a US citizen currently earning my Master's degree in Public Policy at the University of Cambridge in Cambridge, England. Previously, I worked in the Criminal Division of the US Department of Justice.

Right now I am working on a policy project addressing the global challenges of dementia, and ways to promote the international agenda following the December 2013 G8 Dementia Summit.

I am writing to you today because I have a few questions concerning US's efforts to address dementia since the Summit, in particular with regard to long-term care. While the Summit was held in London, it seems that the US has been leading this issue since 2011, with the enactment of the NAPA. I want to make sure the US perspective is clear in my report.

Please let me know if an HHS representative is available to briefly speak with me via email or Skype. Please also let me know what time works best for you.

Thank you. I look forward to hearing from you,

Meaghan E Malloy M.Phil. in Public Policy (MPP) Candidate, 2015 University of Cambridge

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DATE:  November 7, 2014

SUBJECT:  RECOMMENDATIONS FOR YOUR CONSIDERATION

It was nice to see you all at the last meeting. What I am about to say should not be taken in any negative way about you, as I have the highest regard for all of you. I have four key points I would like to make. They are by no means in order of importance as they are all of the highest importance and should be treated as such:

Urgency is a word that I believe should and must be in your plan, preferably at the top of your list. I am very unsure as to why this word was not considered given that this disease is our greatest national health and economic threat in this century. Lack of action now will have serious consequences.

Additional Council Representation by People living with dementia -- As one who has sat through and heard many Council meetings, I am convinced that you need a few people living with early-stage dementia as Council members. They bring a unique perspective and feedback to the issues you are addressing, just as the caregiver representatives do. It is very frustrating to be a public observer at these meetings because there are issues that I am "uniquely qualified" to address; but am not allowed to do so. I believe listening to the needs and preferences of those actually living with this condition would enable the Council to "take a new view" on the importance of honoring our personhood; having community-based services to enable meaningful participation in our communities and our nation. You have heard all this before. THE TIME IS LONG OVERDUE TO ENHANCE COUNCIL REPRESENTATION.

Transparency - As an outsider I believe lack of full transparency is a serious issue for this Council. It should not matter whether you are from the government or the private sector. When you are on this committee you should all be equal to each other except for the chair. All information should be shared.

NATIONAL ALZHEIMER'S PROJECT ACT - PUBLIC LAW 111–375—JAN. 4, 2011

Based on the comments I heard at the committee meeting I was appalled by some of the possible misunderstanding of what power The Advisory Council. This group should all be on the same level playing field and titles should not matter other than for the chair of the committee. Every single person has the capability of making recommendations without any concerns of financials. All recommendations should be consider and recommended that actual benefit those with dementia. Both the Federal and Non-Federal members have the right to submit their recommendations to Congress. Below is a sentence from the law.

ANNUAL REPORT.—The Advisory Council shall provide to the Secretary of Health and Human Services, or the Secretary's designee and Congress

The legislation says that the Advisory Council will pass its findings on to Congress, and leaves it open so that the findings can go directly to Congress from the AC, or can go from the AC, to the Secretary of HHS and then on to Congress.

I find it sad that the government officials felt they could not share this information with their own members when in reality the recommendations could be seen by anyone in the world with Internet access as soon as they were posted to the ASPE website. While the public may not see the transmittal to Congress in its entirety, and clarity on who it was sent to, The Advisory Council should have access to this information.

I consider that extremely disrespectful to your colleagues. I personally saw this problem when you had removed the public comments. After many complaints I was assured it would be resolved; but a year has gone by and there is still no change.

Expectations - I believe that some on members of the Advisory Council have the wrong idea about the expectations for their role. You have been chosen to play a very critical role. This came down from the President. He tasked all of you to identify the problems in dementia research, treatment and care and provide recommendations to advance efforts across all these areas. What an honor. You need to think differently in this role. For all of us who are living with dementia, we need the Council to examine our needs regarding better dementia care services and supports so that we can remain living in our communities as long as possible with our families. The Council needs to consider: What are the resources and funding needed to make that happen; and include them in specific recommendations. We all want a cure and understand that takes a great deal of funding. But millions of us are living with dementia right NOW and NEED community-based service recommendations NOW. You all have the opportunity to make one of the biggest impacts in your life. I and so many others are counting on you to do this. Don't be the person to kill the idea before it is presented.

Make the recommendations for what is needed to assist people living with dementia remain in their communities. Tell Congress what they need to spend to actually make those recommendations a reality, including research. Let the President and top government officials make the final decision. It is your mission to tell them the truth of what is needed; not to determine if it is possible or can even be funded. Yes, you may be asking for too much, but you will be doing what millions of us living with dementia need and want.

Today I believe many of the comments made and actions taken create short falls of reaching inspired goals. Please change that for me and the others that are truly counting on you. That would mean so much to me.

I truly hope I did not upset you again, but someone needs to speak up for all of us.

Regards,

Michael Ellenbogenhttp://www.michaelellenbogenmovement.com/

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OCTOBER 2014 COMMENTS

DATE:  October 24, 2014

SUBJECT:  Heads up regarding a written public comment to be read at the Monday meeting

Thank you for your patience! Here it is, attached.

Best regards,

Steve DeKosky

==========

I've told those who were interested in attending the upcoming meeting that space was not available to do so. I also conveyed your offer to have read aloud a written comment should they send one to you in advance.

They have decided to do so. Steve DeKosky (copied) will send a comment from he and several of his colleagues later today to the address napa@hhs.gov. I mention just so you can be on the look out for it.

Thanks,

Robert Egge Vice President of Public PolicyAlzheimer's Association

ATTACHMENT:   Alz Advisory Council Public Comment - Oct 2014.docx

Available as separate links:
October 2014 Advisory Council Meeting Comments Members of the Advisory Council on Alzheimer’s Research, Care, and Services

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DATE:  October 23, 2014

SUBJECT:  Curing dementia and memory loss by bypassing the messed up functions with plugged in hardware and preprogrammed software

Please see below and then go to DARPA and see what they are doing in brain research. Communicating with different parts of the brain! We may be closer to a fix just jumping over the causes and cures .....

Peter J. Mermagen

==========

From: Peter j MermagenSent: October 22, 2014 at 10:19:16 PM EDTSubject: Curing dementia and memory loss by bypassing the messed up functions with plugged in hardware and preprogrammed software

Last weekend the Class of 59 had its 55th reunion at the University of Rochester. It is a weekend called "MELIORA" WITH TERRIFIC EVENTS AND PRESENTATIONS THROUGHOUT THE SCHOOLS-MED, BUS , EDU ETC.

One of the events I went to was a presentation by four Bio-engineering graduates from the U of R bachelor class of 2004. 2 males and 2 females. 1 Male is now an MD researching male fertility, one male is now a Program Manager at Google. One Female is a PHD faculty member at another University whose postdoc in Austria was in imaging, the other is in imaging in the pharmaceutical industry.

Another event I attended was the future of higher education by four University Presidents. At the reunion dinner I was at the table the U of R Dean Philosopher was at. He, like the University presidents who addressed the future of Universities, started to express concern on the future of Universities. I told him he needn't worry, the next generation of U of R Bioengineers would develop a pill an English major could take to accumulate the knowledge a 4 year program would provide.

I now think rather than a pill it will be a plug in brain/memory module. The same way we replaced horse teams with steam, gas and electric powered cars and trucks or snail mail with email....

Would the agelab help get DARPA to sponsor a competition to provide the electro/data storage/imaging/plug in module and a way to connect it to people that could provide an education equivalent at 1/100th the current cost of a 4 year degree in time and expense and soon provide an alternative to Parkinsons and Alzheimers? Such an approach could accelerate by decades relief much like the autonomous vehicle competition accelerated achievement of that objective.

Something like this will solve a multitude of problems-cost of education, time involved in learning stuff, overcoming learning difficulties....dementia, memory inneffectivity/loss WOW!

In addition to the military benefits of plug in learned modules there might be an ability to avoid mistakes like deciding terrorists are not state sponsored and then we could end it by holding states responsible and get unconditional surrender and sufficient occupation of the sponsors/hosts so they learn english (less extreme thought patterns) and how to live peaceably with each other and us.

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DATE:  October 14, 2014

SUBJECT:  October 27 Meeting Attendance

Please list my name as an attendee of the Monday October 27 meeting of NAPA Advisors.

Also I would like to submittt the attached the pdf of an editorial regarding the Nation Plan to Address; please post this material on your web and allow me 5 min for a brief statement during the open public comments session.

Best Regards,

Zaven Khachaturian, PhD PAD2020 Potomac, MD

ATTACHMENT:   ZK Editorial re national AD Plan JALZ1912_proof[1] copy.pdf

Available as separate links:
Perspective on the "2014 Report on the Milestones for the US National Plan to Address Alzheimer's Disease" Perspective on the “2014 Report on the Milestones for the US National Plan to Address Alzheimer’s Disease”

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SEPTEMBER 2014 COMMENTS

DATE:  September 26, 2014

SUBJECT:  Alzheimer's and Down - Chicago newspaper article on family caregiving

Seth and I wanted to let you know of this article that appeared in the Chicago Tribune yesterday. This is the kind of good press we need more of to make the public more aware of the situations of families and people with intellectual disabilities affected by dementia.

If possible, please offer this to the NAPA Council members.

Best,

Matthew P. Janicki, Ph.D. Co-Chair National Task Group on Intellectual Disabilities and Dementia Practices http://www.aadmd.org/ntg

ATTACHMENT:   Chicago Newspaper Article on Family Caregiving

Available as separate links:
Down Syndrome and Alzheimer's: A Double Burden Down syndrome and Alzheimer's: A double burden

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  September 11, 2014

SUBJECT:  question about public comments

Hello- I work with the Office of Autism Research Coordination, where we coordinate the activities of the Interagency Autism Coordinating Committee, and I'd like to find out a bit more about the way other FACA committees organize public commenting. For ASPE, I've seen the impressive database of comments, but am still wondering:

  1. What mode of commenting is accepted (oral, written, telephone)?
  2. Is a time limit given per commenter, or overall?

Thanks so much for your response.

Emily B Einstein, PhD AAAS S&T Policy Fellow NIH/NIMH Office of Autism Research Coordination

[Return to Public Comment Index or This Year's Table of Contents]

JULY 2014 COMMENTS

DATE:  July 24, 2014

SUBJECT:  Follow-up comments for committee

Attached are my comments for the committee in reference to my speech. I had received many concerns from some and I feel I need to explain more. As usual I am willing to speak about this anytime. Thanks

Michael Ellenbogenhttp://www.michaelellenbogenmovement.com/

ATTACHMENT:   NAPA After Meeting Follow-up 7-21-14.docx

Available as separate links:
July 2014 Advisory Council Meeting Follow-up July 2014 Advisory Council Meeting Follow-up

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  July 22, 2014

SUBJECT:  Speech

It was nice to see you yesterday and attached is me speech requested. As discusses with Ron and Linda, someone will get back to me by mid August with a decision on weather I can do a recoding for you to display on a computer and projected on the big screen.

On another note I also plan to follow up with some remarks to my speech due to some comments I had received from a few members on the committee. I hope to have that to you in the next week or two.

Please let me know should you have any questions.

Regards,

Michael Ellenbogenhttp://www.michaelellenbogenmovement.com/

P.S. In reference to the room we used for themeeting, that was by far the worst type of environment for someone like who has AD due to the noise. Be more than happy to speak with you if you would like to know more.

ATTACHMENT:   Napa Speech July 21 2014.docx

Available as separate links:
July 2014 Advisory Council Meeting Comments July 2014 Advisory Council Meeting Comment

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  July 11, 2014

SUBJECT:  Written Public Comments for July 21st

Please accept these attached written comments for the record of the July 21st meeting of the Advisory Council.

Nancy Wilson

ATTACHMENT:   NAPA DCN Statement .docx

Available as separate links:
July 2014 Advisory Council Meeting Comments July 2014 Advisory Council Meeting Comments

[Return to Public Comment Index or This Year's Table of Contents]

JUNE 2014 COMMENTS

DATE:  June 25, 2014

SUBJECT:  Inheritance

Assistance Needed

Elizabeth Nardozzi

[Return to Public Comment Index or This Year's Table of Contents]

MAY 2014 COMMENTS

DATE:  May 7, 2014

SUBJECT:  Florida Purple Ribbon Task Force

I have attached my October 2013 fifteen page response to the Florida Purple Ribbon Task Force's recommendations. In so doing, I apologize in advance for the quality. Post ADRD estate resolution after 10 years of full time care of a level 6, I went through three bilateral reconstructive surgeries with post op complications resulting in over two years restricted mobility. I had hoped to assemble a more comprehensive document reflecting the needs of the hundreds of caretakers I have communicated with over the years and testify at federal and state hearings on the issues raised in this document but was not able to walk/drive until a few months ago.

We had a triple dose of ADRD in our extended family. As such, all of your efforts to find a cure are deeply appreciated.

Patricia A. Murphy MPA JD

ATTACHMENT:   Response to 2013 Florida Purple Ribbon Task Force Report.doc

Available as separate links:
Response to 2013 Florida Purple Ribbon Task Force Report Response to 2013 Florida Purple Ribbon Task Force Report

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  May 5, 2014

SUBJECT:  Announcement of National Alzheimer's Disease-Stem Cell Conference on November 6, 2014

Enclosed please find our announcement for a new translational neuroscience conference on Alzheimer's disease which will take place on November 6, 2014.

I would be grateful if you could share this with your council members and staff, and circulate within your groups.

http://adstemcellconference.com

Murali Doraiswamy, M.D.

[Return to Public Comment Index or This Year's Table of Contents]

APRIL 2014 COMMENTS

DATE:  April 30, 2014

SUBJECT:  Purple Angel logo

I am writing to support the purple angel logo. As someone who it in the midst of a career transition and had family members afflicted by AD I feel the idea of a logo is fantastic.

Thanks for your time!

Sincerely,

Christine Furbacher

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  April 30, 2014

SUBJECT:  purple angle project

who owns the right to this symbol?

how wrote the top web pages for Alzheimer's. ..lori lava.

our ribbon will never change

David McGarry, CEO COO http://careforacure.net

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  April 28, 2014

SUBJECT:  AARP Written Comments for the April 29 Advisory Council on Alzheimer's Research, Care, and Services Meeting

Attached are written comments from AARP for the Advisory Council on Alzheimer's Research, Care and Services for their April 29 meeting tomorrow. We understand these comments will be shared with the Advisory Council. Please let us know if you have any questions or if there is anything else we need to do for submission of these comments.

Thanks very much.

Rhonda Richards Senior Legislative Representative AARP Washington, DC

ATTACHMENT:   AARP Comments to Advisory Council on Alzheimers Research Care and Services April 29 2014 Final.pdf

Available as separate links:
AARP Statement of Record STATEMENT FOR THE RECORD SUBMITTED

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  April 18, 2014

SUBJECT:  Additional evidence that ionizing radiation causes Alzheimer's disease

Attached please find written comments I am submitting for consideration at the April 29 Advisory Council Meeting. I am also mailing a hard copy to the address provided.

Kindly verify by email that you have received the attached and that it will be included in the materials you provide to Council members.

Sincerely,

Caroline Rodgers

Caroline Rodgers is the author of "Dental X-ray exposure and Alzheimer's disease: a potential etiological association," which was published in Medical Hypotheses in 2011. She gave a poster presentation of her peer-reviewed hypothesis at the Alzheimer's Association International Conference in Paris (ICAD 2011) and has presented her work as a member of the public at meetings of the Advisory Council on Alzheimer's Research, Care and Services in Washington, DC. In 2012 she made a presentation as a member of the public at the FDA Guidance and Workshop on Pediatric X-Ray Imaging Devices. She also attended a 2012 Institute of Medicine workshop exploring commonalities across four neurodegenerative diseases.

ATTACHMENT:   Additional evidence ionizing radiation is causing Alzheimer's disease -- Caroline Rodgers -- 4-29-2014.pdf

Available as separate links:
Additional Evidence That Ionizing Radiation Causes Alzheimer's Additional evidence that ionizing radiation causes Alzheimer’s

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  April 9, 2014

SUBJECT:  comments to be read aloud

Dr. Norman Foster has prepared a statement he would like to be read at the Council meeting on 4/29. I sent a paper copy in the USPS mail to Rohini Khillan for the record. I'm hoping you can clarify how I should submit the attached PDF online. (He cannot attend the meeting in person, so I'm not sure what to put in the subject line or if this email will suffice.)

Thank you,

Margaret Adams-Cooley Administrative Program CoordinatorCenter for Alzheimer's Care, Imaging and Research (CACIR) Salt Lake City, UT http://www.utahmemory.org

ATTACHMENT:   NAPA statement 2014-4.pdf

Available as separate links:
Advisory Council on Alzheimer's Research, Care and Services Meeting Center for Alzheimerʼs Care, Imaging and Research (CACIR)

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  April 4, 2014

SUBJECT:  new song, another video

I was the inspiration behind this about a year ago or more. Please share.

http://www.youtube.com/watch?v=brqei45pado&feature=youtu.be

You Are Here – words and music by Karen Morand, Bakhus Saba and Dale Butler

God knows what's happening here I'm all alone in my fear "Early onset" is what I've been told I'm too young to be old

All the memories I've known Are fading into the unknown The life I lived with the people I love Are ghosts that haunt me now And I need to know somehow...

(chorus) Chorus: You are here You are near Hold my hand One thing remains through the years – you are here.

I look in the mirror and what do I see? The eyes of a stranger stare back at me The look is familiar but something is wrong Like an old forgotten song Can you help me sing along?

(chorus, bridge) Bridge:

All that I know is this moment right now You may be a stranger but love me somehow In time you will get to know Love's hardest lesson is in letting go

One day you'll pack up my things I'll leave you behind spreading my wings Forgetting confusion, losing the pain But I'll remember your name And I'll love you just the same...(quiet chorus, full chorus)

Michael Ellenbogenhttp://www.michaelellenbogenmovement.com/

[Return to Public Comment Index or This Year's Table of Contents]

MARCH 2014 COMMENTS

DATE:  March 14, 2014

SUBJECT:  Attending the February 3, 2014 NAPA meeting

I wish to attend and offer public comment at the February 3, 2014 NAPA meeting in Washington D.C. Our organization (Lucanus Center) has offered community based services and supports to people with intellectual disabilities in Hollywood Florida for the past 40 years. I serve on the NTG committee and also the CFARF board of trustees. Together, we are partnering with the Broward Memory Center implementing the Dementia pilot for Florida for persons with intellectual disabilities and dementia. We presently provide services to over 75 either at-risk or with dementia. Our legislative appropriation is presently heavily supported in Tallahassee by the House, Senate and Governor Scott's office.

We will implement dementia services and supports utilizing the new CARF standards for dementia care for ID with dementia, NTG formal curriculum for caregivers developed in Hollywood July 30, 31, NTG dementia screening instrument, and the Cornell safety dementia friendly checklist. On Saturday, January 11, our group met in Hollywood Florida. The Broward memory center is devoting neurologist, geriatric psychiatrist, neuropsychiatric, geriatric RN, Geriatric Social Worker to work closely with Dr. keller, Dr. janicki and the entire Lucanusteam. We will being working with typical senior centers in February when I present at their annual conference.

I am hopeful we can gain unwavering support for your Advisory Council to guide, direct and support our efforts going fourth. One parent told of her daughter falling and she sleeps on the floor with her because she cannot pick her up off the floor. The mom also has early dementia but will not report to state officials in fear of losing her daughter and being placed in a nursing home. We are presently providing in-home supports to both the mom and daughter and the daughter has not fallen since. We also are beginning a new program at no cost to do the laundry for the aging caregiver.

Thanks for your consideration for our humble request,

Thomas Buckley Ed.D. Lucanus Center-Executive Director CARF International Board of Trustees Florida Special Olympics Board of trustees

[Return to Public Comment Index or This Year's Table of Contents]

FEBRUARY 2014 COMMENTS

DATE:  February 10, 2014

SUBJECT:  Please Support of the Purple Angel Project

One global symbol for Dementia is needed. Please support the Purple Angel Project.

MARGIE VAN ZYL ChairpersonCape Town, South Africahttp://www.sa-careforum.co.za

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 9, 2014

SUBJECT:  PLEASE SUPPORT THE PURPLE ANGEL PROJECT

As a healthcare professional who works with dementia patients and their families on a routine basis, I would like to see this symbol help spread awareness and support of a common goal around the world to conquer this devastating disease.

Sincerely,

Teresa Pitre Registered Pharmacist Toronto, Ontario, Canada

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 9, 2014

SUBJECT:  PLEASE SUPPORT THE PURPLE ANGEL PROJECT

If you are not familiar with the Global Purple Angel heris a bit of information about why it was designed and who started this movement. The goal of the symbol is very simple:

To raise awareness and education of all types of dementia's.

To show support for those dealing with all types of dementia's; both those diagnosed as well as those that care for them.

To remove the fear, isolation and stigmas associated with the disease.

To become a global symbol for dementia that has no language barriers.

To have the "Global Purple Angel" become as well known and accepted as the "Pink Ribbon" for breast cancer, allowing people to live with dignity.

To provide an economical way to work in collaboration.

The Global Purple Angel was developed by NorrmsMcNamara a man living with dementia and designed by Jane Moore. The symbol is copyrighted by them. In true collaborative fashion, they are sharing the symbol with the world in order to shift our dementia care culture in a rapid fashion. There are individuals and well as businesses of all sizes, embracing the symbol, educating their staff, clients and prospects.

This is a massive movement which started in the UK and has spread worldwide.

Thank you for your time,

Susan K Scarff http://www.dementiathejourneyahead.com/

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 9, 2014

SUBJECT:  PLEASE SUPPORT THE PURPLE ANGEL PROJECT

I am sending you this email to make you aware of the following:

If you are not familiar with the Global Purple Angel here is a bit of information about why it was designed and who started this movement. The goal of the symbol is very simple:

  • To raise awareness and education of all types of dementias.
  • To show support for those dealing with all types of dementias; both those diagnosed as well as those that care for them.
  • To remove the fear, isolation and stigmas associated with the disease.
  • To become a global symbol for dementia that has no language barriers.
  • To have the "Global Purple Angel" become as well known and accepted as the "Pink Ribbon" for breast cancer, allowing people to live with dignity.
  • To provide an economical way to work in collaboration.

The Global Purple Angel was developed by NorrmsMcNamara a man living with dementia and designed by Jane Moore. The symbol is copyrighted by them. In true collaborative fashion, they are sharing the symbol with the world in order to shift our dementia care culture in a rapid fashion. There are individuals and well as businesses of all sizes, embracing the symbol, educating their staff, clients and prospects. This is a massive movement which started in the UK and has spread worldwide.

This symbol should become the international one for ALZHEIMER'S and all the DEMENTIA'S in the world. This disease is becoming an epidemic in the world and more needs to be done to prevent it. No luck has been had in curing this disease, so prevention is the next step.

PLEASE HELP MAKE THIS COME TO BE! MAKE THIS SYMBOL THE INTERNATIONAL ONE....

I was the caregiver for my husband, Vincent, who passed from this horrible disease two and a half years ago, but I am still an ADVOCATE for all those who now have this disease and those who will be diagnosed in the future....

THANK YOU

Jacquelin R Cerqua

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 9, 2014

SUBJECT:  PLEASE SUPPORT THE PURPLE ANGEL PROJECT

I am 0ne of Norman McNamara DEMENTIA PURPLE ANGEL AMBASSADOR'S IN GREAT BRITIAN U.K. WE ALL SUPPORT YOU IN THIS VERY IMPORTENT CAMPAIGN. Cheerio.

Bill Wilson.

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 9, 2014

SUBJECT:  The Purple Angel Project

As a caretaker for my husband who is one of the millions diagnosed with Alzheimer's Disease, I urge NAPA to embrace and get behind the Purple Angel Project. It is anunique symbol representing all types of dementia. While the ribbons which represent many different diseases are well known, there are many ribbons of the same color representing different diseases. The Purple Angel would be immediately recognizable as representing dementia awareness world wide. I know that you are aware of the epidemic which is projected to happen in the future and the more people become aware of dementias the more people will be able to be helped as they take the dementia journey.

Thank you,

Linda Buytendorp

http://alzheimersspeaks.wordpress.com/2014/02/09/the-purple-angel-project-napa/

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 9, 2014

SUBJECT:  PLEASE SUPPORT THE PURPLE ANGEL PROJECT

"PLEASE SUPPORT THE PURPLE ANGEL PROJECT"

If you are not familiar with the Global Purple Angel heris a bit of information about why it was designed and who started this movement. The goal of the symbol is very simple:

  • To raise awareness and education of all types of dementias.
  • To show support for those dealing with all types of dementias; both those diagnosed as well as those that care for them.
  • To remove the fear, isolation and stigmas associated with the disease.
  • To become a global symbol for dementia that has no language barriers.
  • To have the "Global Purple Angel" become as well known and accepted as the "Pink Ribbon" for breast cancer, allowing people to live with dignity.
  • To provide an economical way to work in collaboration.

The Global Purple Angel was developed by NorrmsMcNamara a man living with dementia and designed by Jane Moore. The symbol is copyrighted by them. In true collaborative fashion, they are sharing the symbol with the world in order to shift our dementia care culture in a rapid fashion. There are individuals and well as businesses of all sizes, embracing the symbol, educating their staff, clients and prospects. This is a massive movement which started in the UK and has spread worldwide.

For More Information On The Purple Angel Project And How You Can Get Involved, Please Visit Our Website Below For More Details. http://alzheimersspeaks.com/purple-angel-project

Marcus Bennett

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 9, 2014

SUBJECT:  PLEASE SUPPORT THE PURPLE ANGEL PROJECT

If you are not familiar with the Global Purple Angel heris a bit of information about why it was designed and who started this movement. The goal of the symbol is very simple:

  • To raise awareness and education of all types of dementias.
  • To show support for those dealing with all types of dementias; both those diagnosed as well as those that care for them.
  • To remove the fear, isolation and stigmas associated with the disease.
  • To become a global symbol for dementia that has no language barriers.
  • To have the "Global Purple Angel" become as well known and accepted as the "Pink Ribbon" for breast cancer, allowing people to live with dignity.
  • To provide an economical way to work in collaboration.

The Global Purple Angel was developed by NorrmsMcNamara a man living with dementia and designed by Jane Moore. The symbol is copyrighted by them. In true collaborative fashion, they are sharing the symbol with the world in order to shift our dementia care culture in a rapid fashion. There are individuals and well as businesses of all sizes, embracing the symbol, educating their staff, clients and prospects. This is a massive movement which started in the UK and has spread worldwide.

Gary Irvin Gillespie, IL

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 9, 2014

SUBJECT:  The Purple Angel

Please help make the purple angel the recognized international symbol for dementia, and the wristband project help to identify dementia patients, thus avoiding catastrophic hospitalizations.

Thank you,

Ruthie Rosenfeld Family caregiver Brooklyn, NY

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 9, 2014

SUBJECT:  Purple Angel

Please support the Purple Angel project.

THIS MESSAGE WAS SUBMITTED BY THE FOLLOWING PEOPLE DURING THE MONTH OF FEBRUARY 2014:

  • Gerweeze.
  • Wanda Montgomery
  • Kathleen Mengle
  • Bobbi Carducci
  • Laurie Bertzyk
  • Ann Mooney
  • Debbie Carroll

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 9, 2014

SUBJECT:  Please support the purple angel project

I'm writing to ask NAPA to get behind the new global symbol for dementia. No longer can we have each country or organization spending resources to develop their own propriety symbol or resources. Its' time we join forces and have one symbol that becomes as well known as the Pink Ribbon for Breast Cancer.

I won't quote the stats on dementia. I know this council is very aware of them. Please add fuel to the fire and join this massive movement that started in the UK and has spread around the world. The Purple Angel costs no money and little time to institute; and will help bring the world together in a collaborative fashion; bringing government, organizations, communities and individual citizens together to unite to win this battle.

For more information feel free to go to my website at http://alzheimersspeaks.com/purple-angel-project or contact me directly at 651-216-5413.

Thank you for your consideration and action in advance.

Lori La Bey, CSA, COS, AOSAD Official Purple Angel Ambassador Founder of Alzheimer's Speaks http://www.alzheimersspeaks.com/

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 9, 2014

SUBJECT:  Suggestions for NAPA implementation

Is this the correct address to submit suggestions in connection with the National Alzheimer's Project Act and implementation...

Stanton O. BergForensic Consultant (Retired)

At age 85, I have a body with many cracks, crevices and creases, resting on a swaying foundation but God has been good and I am "chugging along" while missing June - I've got Memories by the dozen, and Reminiscences by the score... the day I stop remembering is the day my world will end! Visit June's Website: http://www.junebergalzheimers.com

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 9, 2014

SUBJECT:  Please support this most needed cause. Thanks in advance.

This was sent from my PROSCAN table .

Shirley Rush Duke

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 4, 2014

SUBJECT:  Hospital Dementia Wristband Program & Purple Angel

I wanted you to be aware that I have founded a Dementia Hospital Wristband Program here in Florida and we are using the Purple Angel logo for all types of dementia. The program is very well received and something that should have been put in place a long time ago. It is crucial that we make sure our dementia patients remain calm and safe in out hospitals.

Please consider using this logo for other program that are dementia related.

Here is a link to Alzheimer's/Dementia Hospital Wristband Program, please check it out. http://commonsensecaregiving.com/Wristband_Project.html

Sincerely,

Gary Joseph LeBlanc Common Sense Caregiving http://www.commonsensecaregiving.com/

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 4, 2014

SUBJECT:  Purple Angel awareness raising in Dementia

I work as a CPN in Later life services in Manchester. I received an email from a colleague who is involved in a awareness raising in dementia campaign ,as I am myself. The very simple Purple Angel logo is recognised all across UK and globally as a symbol of hope.

The Hope is that communities will commit to being dementia friendly and stigma associated with this brain disease will lessen.Showingthe logo is by way of pledge to stand together to make this happen.

I trust if you read about the efforts of Norman McNamara(Norm Mac on Facebook ) who has Lewy Body dementia and is the inspiration behind the Purple Angel Ambassador(PAA) initiative, further information is available on the following sites.

http://www.tdaa.org.uk or http://www.ostrichcare.co.uk Information on the latest news of his joint working with Alzheimer's Society,or update on the meeting with Mr David Cameron, Prime Minister recently is available. The purple angel is working so well from grassroots to highest level.

I wish NAPA well in all its excellent work. I trust that you will take the time to find out more about the purple angel campaign too and be proud like me to be associated with the ground swell of increasing awareness it is supporting.

Sincerely

Bridie Breen PAA Manchester.

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 4, 2014

SUBJECT:  NAPA Conference

I understand that NAPA is considering adopting the Purple Angel logo as a recognisable worldwide symbol for dementia awareness.

As a Purple Angel Ambassador in Bristol, England, I fully support all that the Purple Angel Campaign is doing.

Businesses, organisations, libraries, schools and uniformed organisations like Brownies, Cubs, Scouts and Guides have heard about and seen the Purple Angel in our city..

It is easily recognisable and shops, organisations, churches and cars proudly display their logo as a sign of being a dementia-friendly community.

I sincerely hope you consider adopting this symbol, and help create dementia aware communities throughout the world.

KR's

Tony Hall Chair -- Bristol Dementia Action Alliance

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 4, 2014

SUBJECT:  Purple Angel recognition

I have been forwarded an email from a colleague regarding NAPA adopting the Purple Angel logo as a recognisable symbol for dementia awareness.

I fully support all that the Purple Angel are doing and have since become an ambassador myself, to create awareness in the Welsh language and Wrexham, North Wales. Here we have seen that the Purple Angel is easily recognisable and shops proudly display their logo as a sign of being a dementia-friendly environment. I sincerely hope you consider adopting this symbol, and help create awareness within communities throughout the world.

Kind Regards

Chris Hodge Ostrich Purple Angel Ambassador

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 3, 2014

SUBJECT:  Purple Angel

I would like you to be aware that I am a Purple Angel Ambassador and it would be really great if NAPA would support us and recognize the purple angel as the worldwide dementia awareness logo.

Kind regards

Beverley Hickey

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 3, 2014

SUBJECT:  Purple Angel Dementia Awareness Logo

As a Purple Angel Ambassador and a Day Centre Manager with Age Concern Hampshire I would welcome the endorsement by NAPA of the Purple Angel. It truly represents a worldwide growth in the recognition of Dementia Awareness. I hope that you will join us in this campaign.

Sincerely

Mandy Rowlands

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 3, 2014

SUBJECT:  Purple Angel Logo Support

I'm writing to ask you to please adopt the Purple Angel Logo for Dementia Awareness.

Thank you.

Dr. Ina Gilmore, M.D. Founder, Caregiving With Purposehttp://CaregivingWithPurpose.com

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 3, 2014

SUBJECT:  

My name is Lisa Holland and I am in support of the purple Angel emblem and really hope NAPA consider joining forces and will support this as a global dementia awareness logo. This could create a world of strength fighting for the same things and making the world more dementia aware.

I have a personal background with dementia as my mother had dementia 5 years ago and I had no support. I work on a daily basis with individuals with dementia as to try and make this a better care system for early onset dementia and due to the Purple angel the awareness has grown enormously so individuals never have to go through what my mother and I had to deal with.

I hope you would take your time to consider this as working together to gain the same outcome would be extraordinary Progress for all involved.

Kind Regards

Lisa Holland Lead Care Practitioner Olinda Trust Residential Care Home Colwyn Bay

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 3, 2014

SUBJECT:  Purple Angel Emblem

I write in support of Michael Ellenbogen's request that you consider support for the Purple Angel Dementia Aware Emblem, which is fast becoming known all over the world.

I am the co-designer of this emblem which is features on Alzheimer's Disease International Webpage as a global solution . http://www.alz.co.uk/symbol.

People all over the world are using this emblem to raise awareness by visiting shops and businesses with information, creating memory cafes and dementia friendly communities. We now have over one hundred Ambassadors who are encouraging advocates in their countries to follow suit. In the UK; USA; Canada; Germany; Indonesia; Singapore; Australia; New Zealand; Nepal; Romania; Hungary; India, Bangladesh and many more. Many of our ambassadors are activity co-ordinators.

In the UK, we have the support of our Alzheimer's Society; David Cameron; The Royal College of Nursing; The Mental Health Foundation and many other organisations.

This has truly become the "people's choice" and is improving the lives of many people with dementia and their families.

I never imagined that this would happen when the emblem was first created for a small town in the South West of the UK.

NAPA's recognition of this emblem would truly be an honour for all who are working so hard to help people struggling to come to terms with dementia and giving them hope for the future.

Very sincerely,

Jane Moore Camelford Dementia Action AllianceCornwall, UK http://camelforddementiaactionalliance.weebly.com/

[Return to Public Comment Index or This Year's Table of Contents]

DATE:  February 3, 2014

SUBJECT:  Purple angel

I am a Purple Angel Ambassador from England, United Kingdom. Many people like myself are promoting dementia awareness and campaigning relentlessly. It would be extremely important to all those involved with Dementia Awareness to have the purple Angel as a united logo.

Thank you

Tracy Edwards

[Return to Public Comment Index or This Year's Table of Contents]

JANUARY 2014 COMMENTS

DATE:  January 28, 2014

SUBJECT:  february 3 meeting attendance

I wrote last week through the outlook email but want to be sure that my email was received in a timely manner.

I wish to register two names attending and wishing to speak for the public comment section of the meeting.

The two attendees are:

Dr. Thomas Buckley- Member of NTG on Dementia practice's for individuals with ID CARF board member-drafted new standards Dementia care for persons with ID

Dr. Celia Rokusek Assistant dean of Nova Southeastern College of Osteopathic Medicine Geriatric Education Center

Dr. Rokusek and I developed a dementia pilot for persons with Dementia and intellectual disabilities. The Lucanus center in Hollywood provides services and supports to over 300 people with disabilities. Our family has operated the Lucanus center for the past 40 years. We developed the Dementia Pilot with the guidance and direction of Dr. keller and Dr. Janicki. We implemented all the NTG supports. We also partnered with the Broward Memory Center providing critical medical oversight and diagnosis for persons with intellectual disabilities.

I will be traveling to Washington Monday morning arriving with Dr. Rokusek at 9:20. We are hopeful we can pass through security in a timely manner. Can you please notify security of our two names?

I look forward to attending your NAPA meeting. Your NAPA committee has provided incredible support documents utilized in our dementia pilot.

I look forward to meeting and support your NAPA going forward. I attached a copy of our pilot for your review.

Dr, Thomas Buckley

ATTACHMENT:   browaardcountywhiepaperfinal.docx

Available as separate links:
Interprofessional Person-Centered Dementia Management for Broward residents with ID/DD Interprofessional Person-Centered Dementia Managment for Broadward Residents with ID/DD

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DATE:  January 24, 2014

SUBJECT:  Written comments for meeting?

Is there a way to submit written comments to the NAPA advisory council electronically, or do they have to be mailed?

Thanks,

Sarah E. Cavanaugh, Ph.D. Medical Research Specialist Physicians Committee for Responsible MedicineWashington, DC

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DATE:  January 1, 2014

SUBJECT:  NAPA speech to be read by you - thanks

Attached is my speech to be read at the next NAPA meeting. I have also attached a slide that I hope you can show during the time you read my speech. If that is not possible then just show the picture on the third page of my word document of the speech. Please let me know if you have any questions or issues? I will not be available after Jan 30th. Thanks again for doing this and I sure hope to attend the next meeting.

Thanks,

Michael Ellenbogenhttp://www.michaelellenbogenmovement.com/

ATTACHMENT:   NAPA Speech Feb 3 2014.docx   RAISING AWARENESS AROUND THE WORLD.pptx

Available as separate links:
February 2014 Advisory Council Meeting Comment February 2014 Advisory Council Meeting Comments
Purple Angel Logo Raising Awareness around the World

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