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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Call to Action

Let’s help STAMP OUT Alzheimer’s!

15 Wednesday Feb 2017

Posted by Ann Napoletan in Advocacy and Awareness, Call to Action, Help Stamp Out Alzheimer's

≈ 3 Comments

Tags

alzheimers, Alzheimers advocacy, alzheimers awareness, alzheimers funding, alzheimers semipostal, dementia, help stamp out alzheimers

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.  ~Margaret Mead

 

I’ve always loved this quote. I believe Margaret Mead’s words. I’ve seen it in action – you and I do have the power to make a REAL difference!

This is one of those moments; your voice is important and impactful! I hope you’ll take a few moments to respond to this call to action!

Learn more about the Help Stamp Out Alzheimer’s effort in this piece from last March.  Alzheimer’s Semipostal Update: March 2016.

There are two actions you can take:

  • Leave a comment on the USPS site urging issuance of an Alzheimer’s fundraising stamp.  Take a few minutes and to leave a comment for the Postmaster General encouraging her to approve an Alzheimer’s fundraising stamp. The Breast Cancer semipostal stamp has raised over $81 million since its inception and we can do the same for Alzheimer’s disease! Click here to visit the site. 
  • Write to Postmaster General, the Honorable Megan J. Brennan. What follows is a letter you can copy and paste to use as your template!

Thank you for your support!


<date>

The Honorable Megan J. Brennan
Postmaster General
United States Postal Service
475 L’Enfant Plaza, S.W.
Washington, D.C.  20260-0010

Dear Postmaster General Brennan:

I urge you to exercise your authority to issue an Alzheimer’s Disease Awareness and Research semipostal stamp. In July 2016 fellow advocate Kathy Siggins filed the requisite paperwork with your office. All of the major Alzheimer’s advocacy organizations – Alzheimer’s Association, Alzheimer’s Foundation of America, The American Academy of Neurology, and UsAgainstAlzheimer’s – as well as countless citizens have joined us to support this action and 415 private citizens have left favorable comments on your blog, “Putting A Stamp on Good Causes”. In the year that has passed, more than 470,686 Americans have been diagnosed with this cruel and always fatal disease. Still we have not heard from you.

First described over 100 years ago, Alzheimer’s is now recognized as our nation’s 3rd leading cause of death and the only illness among the top ten for which there is no known prevention, treatment, or cure. The disease has a staggering reach: Roughly one out of every five of us is at risk of developing Alzheimer’s in our lifetime. Caring for those with Alzheimer’s costs the United States an estimated $236 billion each year in addition to the tremendous personal costs borne by families. By 2025, the number of people age 65 and older with Alzheimer’s disease is estimated to reach 7.1 million — a 40 percent increase from the 5.3 million age 65 and older currently affected.

With a problem of such magnitude we must use every means available to move us swiftly towards a cure. The Alzheimer’s semipostal stamp is a highly symbolic method to raise awareness and allow ordinary citizens to show their support for individuals and families impacted by this devastating disease. As importantly, it would help raise much needed funds for medical research through the voluntary purchase of postage stamps with no appreciable cost to the taxpayers.

As you know, we currently have 2 semipostals, the Breast Cancer Research semipostal which, as of November 2016, has raised over $83.9 million for breast cancer research and the Save Vanishing Species semipostal, which has raised over $31 million. Even though the Semipostal Stamp Program Proposed Rules specifically state that the cause “furthers human welfare,” proceeds raised by selling the Save Vanishing Species semipostal goes to the U.S. Fish and Wildlife Service to support the Multinational Species Conservation Funds.

In 2008, the USPS issued the first ever Alzheimer’s Awareness commemorative stamp which has since been retired. At its unveiling, Postmaster General John Potter spoke these words: “With the Alzheimer’s Awareness commemorative stamp, we’ll ask Americans to use the power of mail to raise awareness about this tragic disease. We hope to draw attention to the causes of the disease, the impact it has on individuals, caregivers and society, and how research may eventually lead to treatments that prevent or halt the progression of the disease.”

It is now time for an Alzheimer’s Disease Semipostal Stamp – a stamp that would raise both awareness and funds and move us closer to prevention and a cure. On behalf of the the more than 5.3 million Americans suffering with Alzheimer’s and other dementias, their 15.5 million unpaid caregivers, and those yet to be diagnosed, I urge you to take action and provide hope where so little hope exists.

Thank you for your time and consideration. Please let me know when we might expect a decision on this matter.

Sincerely,

<your name>

 

 

 

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Please Vote for Us: Healthline’s Best Health Blog of 2016

30 Wednesday Nov 2016

Posted by Ann Napoletan in Advocacy and Awareness, ALZ Blog, Blogging, Call to Action, Marilyn's Legacy

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Tags

alzheimers, alzheimers awareness, alzheimers blogging, dementia, healthline best health blog contest

12.15.16 Update:  Thank you for voting! Of over 350 nominated blogs, we placed 17th, and there were THREE Alzheimer’s blogs in the top 20! 

We’re proud to announce that The Long and Winding Road has been nominated as one of Healthline’s Best Health Blogs for the third year in a row. Voting is open until December 12, and you can vote once every 24 hours. To vote, simply click here or on the image below. When the voting page fully loads, type “Long and Winding” in the search box to find us and then click VOTE!!!  We appreciate your support.

* Note: Should we be so fortunate, any prize money received would go directly to our non-profit, Marilyn’s Legacy: A World Without Alzheimer’s, to continue the work of fighting AD and supporting families who are on this journey right now. 

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Call to Action: Online Caregiver Survey for Research Study

06 Sunday Nov 2016

Posted by Ann Napoletan in Advocacy and Awareness, Call to Action, Caregivers, Research

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Tags

alzheimers, alzheimers caregiver research, alzheimers caregiving, alzheimers research, dementia

survey

Friends, please take a look at this opportunity from Xavier University. I would encourage you to participate if you qualify and are able. Research regarding caregivers is so critical.

__

You are invited to take part in a research study regarding dementia caregivers. This study is being led by Amy Olzmann, M.A. and Amy Houston, M.A., and supervised by John Barrett, Ph.D. at Xavier University.

The study involves answering a series of online questionnaires designed to increase our understanding of caregiving. We are inviting participants (age 18 and older) who are primary caregivers for friends or family members with dementia to complete an online survey. Caregiver participants must be able to read English. It is anticipated that this survey will take approximately 30 minutes of your time to complete. The survey is completely anonymous.

However, if you would like to enter a drawing for one of sixteen $25 Amazon gift cards as thanks for participating, you will be asked to enter your email address at the end of the survey. Email addresses will be collected on a separate survey, and your name will not be linked with your survey responses.

In addition, we request that you forward/share the survey link with other individuals caring for friends or family members with dementia who may wish to participate in this study so that they may have the opportunity to assist us in gathering information about dementia caregiving.

Please click on the following link if you are interested in learning more about the research study: http://tinyurl.com/z4ukpcw

Amy Olzmann, M.A.
Email: olzmanna@xavier.edu

Amy Houston, M.A.
Email: houstona1@xavier.edu

 

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Marilyn, BA (before Alzheimer's)

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