Dear Mr. President…

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This is a letter I recently sent to President Obama. I hope you will not only read this letter, but take 5 minutes to write your own letter to your representatives and to President Obama. Write a letter to your local newspaper editor. Write a message to USA Today. Write to your local TV stations. It is time for you to share your story. Imagine if we ALL write letters and share our stories. 1000’s of voices can no longer be ignored. The time, the momentum and the need is here. Thank you for being part of the solution. We can’t do this without you.

Dear Mr. President,

Congratulations on your successful State of the Union address.  I was glad to hear that more people will have access to jobs and higher wages. I was happy to hear that our military is getting more support. I was grateful that childhood education is important to you.

I was extremely disappointed by the lack of reference to Alzheimer’s Disease. There was no mention of helping caregivers and funding more research to possibly find a cure or at least a treatment. Are you aware that Alzheimer’s Disease is the only cause of death among the top 10 in the U.S. without a way to prevent, cure or even slow its progression?

Let me introduce myself. My name is Karen Garner and I am 44 years old and live in Newport News, VA. I have two children, ages 9 and 13. I am married to retired Air Force Senior Master Sergeant, James B. Garner. He is 51 and has Younger Onset Alzheimer’s Disease. We have been dealing with the early stages for about 4 years now. He is getting worse. He is having difficulties with his short -term memory and finding the right words to start or finish a sentence. He can no longer multi task and has trouble finishing something he starts. Please keep in mind he was a Sr. Msgt. He worked hard and was a very proud serviceman. Now, he cannot keep a schedule straight or even figure out how to hang a picture. Unfortunately we both know these symptoms are the easy ones and his progression with the disease will continue to get worse month after month and year after year until he is no longer able to write, bathe himself or swallow.

We have been advocating in Washington, D.C. for a few years now, asking for more money and help. Although the budget passed this year includes the highest amount ever given for AD research, it is far from what is necessary to realize progress. Although there was money within the $122M increase allocated for support services, there is still not enough money for support for caregivers, who are going through severe struggles each day for years and years and years. This is not a quick disease. People live with Alzheimer’s an average of 4-8 years after noticing symptoms but up to 20. This is a disease that affects the whole family and destroys them.

It is time to move this epidemic where it belongs; at the top of the list of funding and awareness. Only then will a change take place. Do you know how much money was given to Alzheimer’s research funding in 2013? 480 million. That sounds like a lot to the lay person, but I am sure you can understand that in reality this is not a large sum. Not when compared to cancer (almost 6 Billion) or HIV/AIDS (just over 3 Billion) or Cardiovascular Disease (over 2 Billion). Those all have treatments and cures. They can have survivor walks. Alzheimer’s Disease cannot. There are no survivors. When you sit in front of the doctor and finally get somewhat of a diagnosis you are given no hope. No chance of survival. No good timeline. No support. No help. None. You are simply told to come back in 6 months.

As a country, we spend over $140 BILLION a year on Medicare and Medicaid for those with Alzheimer’s. Just to help take care of them, not even taking care of the caregivers. Please also keep in mind that $140 Billion for Medicare and Medicaid does not include the unpaid caregivers that have quite their jobs or now need medical help themselves after struggling to take care of their loved one that can no longer take care of themselves. Even our 9 year old son does not understand how we can give so much money to other ailments that have cures and treatments and survivors, but so little to something that affects so many and has nothing.

I could fill this letter with lots of statistics. I have already put more in than I am comfortable with. But it needs to be said. It needs to be talked about and it needs to be addressed.

If we do not do something NOW, this epidemic will bankrupt our country.

With all due respect, I am asking how you plan to address this national health crisis?

I have a very good reason. Actually TWO very good reasons. You see, my husband has Younger Onset and his brother died from Younger Onset and his Mother died from Younger Onset. They all started showing symptoms around the same age.

Mr. President, I am writing to you as a Mom of two equally beautiful, bright and amazing children and I am begging you to stand up for the millions of citizens of this country that are affected, will be affected and have no one to turn to for help. I am begging you to save our children. I am begging you to help save the millions of caregivers that are suffering unimaginable grief for years on end.

My hope is that before you leave office, you will be able to introduce the first Alzheimer’s Disease survivor. That would be a legacy unlike any other.

Thank you for all of your hard work and dedication to this great land of ours. Thank you for taking the time to read this. Thank you in advance for listening and making Alzheimer’s Disease a priority, just as was discussed in the recent G8 Summit in London.

Sincerely,

Karen H. Garner

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Younger Onset Alzheimer's Disease and have Comments (6)

6 Responses to “Dear Mr. President…”

  1. Allan Schur says:

    GREAT letter Karen. We’ve started “The Cottage 60 Project” here with an emphasis on writing to ALL of Nebraska’s Members of Congress prior to the Alzheimer’s Forum in April. For those who need the name and/or address of their Members of Congress, go to my website http://www.ourclinicaltrial.info and click on the Cottage 60 Project tab at the top right of the Home page. Don’t forget, we all have THREE Member of Congress – a Representative and two Senators – so write to all three and make the job of your state’s Forum delegation easier!!!

  2. Ann says:

    What a heartfelt letter – hitting on not only the statistics, but more importantly, the HUMAN side of the disease. I am just finishing up letters to 15 or 16 U.S. Senators and will add one to Mr. Obama. Thank you for being a constant source of inspiration.

  3. Bakhus says:

    Well written and right to the heart of the matter Karen.

  4. I have the addresses for all the congressmen and Senators and my plan is to send a letter, and a book to some. This way they can find out first hand the progress of the disease and the helplessness of the caregiver learning and living with Alzheimer’s ever day.

  5. Lee Ann says:

    Great letter. I am sure Mr. Obama would like to spend a lot more than he put in the budget. But there are divisive forces in Congress that fight every idea presented. There are those in Congress that want to fight everything, they want to privatize medicare, get rid of medicaid, etc. So I doubt that the research dollars for ALZ will even remain in the budget. There are a lot of people hurting right now, and I think its a big mess in Washington DC.

  6. Mary says:

    Bravo! Very well written. You should send it in as a letter to the editor in the New York Times and other major news outlets. I have been saying for years that they should flip the money allocations between Alzheimer’s and HIV/AIDS. It makes no sense!

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