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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Tag Archives: alzheimers funding

Call to Action: Contact Your Representative Before the Budget Vote!

25 Tuesday Apr 2017

Posted by Ann Napoletan in Advocacy and Awareness, Call to Action, Research, USAgainstAlzheimer's, Washington

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alzheimers, alzheimers funding, alzheimers research, dementia, fy 2017 budget, nih funding, nih research

Hello friends! As you have likely heard in the news, we’re facing a government shut down on Friday, 4/28, unless Congress passes an FY 2017 budget quickly! You may also know that President Trump is pushing to slash NIH funding in a big way, which will have a detrimental effect on critical medical research – including Alzheimer’s research. 

Click below, enter your street address and zip code, and your representative’s contact information will be at your fingertips. It’s quick and easy. Call and urge him or her to keep all planned funding for Alzheimer’s research *IN* the 2017 budget! Be sure to mention that you’re a constituent. It just takes a minute and your voice matters! 

Click here –> Find My Representative

Thank you to UsAgainstAlzheimer’s for making this action so simple!

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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

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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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Marilyn’s Legacy: 2016 Annual Giving Campaign

11 Tuesday Oct 2016

Posted by Ann Napoletan in Advocacy and Awareness, Fundraising, Marilyn's Legacy, Mom, Quotes, USAgainstAlzheimer's

≈ 8 Comments

Tags

alzheimers, alzheimers awareness, alzheimers caregivers, alzheimers families, alzheimers funding, alzheimers research, dementia, Marilyn's Legacy

It was a year ago on my mom’s birthday, October 12, that I publicly announced my intent to establish a non-profit to keep her memory – and legacy – alive. In early 2016, Marilyn’s Legacy: A World Without Alzheimer’s was born, and shortly thereafter, we were granted tax-exempt status under section 501(c)(3) of the federal tax code.

Our inaugural fundraiser was a great success, and we’ve been pleased to contribute $900 to UsAgainstAlzheimer’s this year. This is an organization near and dear to my heart. I have co-moderated their online support group for three years and have come to know and deeply respect their tireless, determined leadership team. Founders George & Trish Vradenburg personally cover 100% of overhead expenses, ensuring that every dime contributed goes directly toward the goal of ending Alzheimer’s by 2020.

We are optimistic about the potential of preventative and disease-modifying drugs in the pipeline; however, in 2017, Marilyn’s Legacy will broaden our mission slightly. We will seek out opportunities and projects to directly benefit individuals currently living with Alzheimer’s and other forms of dementia.

While a focus on research funding remains critical to our organization’s purpose, we also recognize that millions of Americans are currently in the throes of the illness and need help now. For them, the therapies won’t come soon enough. We feel our mission statement should reflect our profound and passionate belief in person-centered care and each individual’s right to the best possible quality of life at every stage.

This December will mark four years since my mom left this earth, and there are days when it still doesn’t seem real. I suppose people think it should get easier, but I’m not sure that’s the case. Indeed the intense, searing pain subsides over time, but it gives way to a dull ever-present ache. With each milestone or important life event, the list of things I want to share with her grows. Even the mundane, routine happenings can be a stark reminder of her absence and the void in my heart that will never be filled.

Weeks like this are difficult. Mom would have celebrated her 80th birthday on October 12. I’m feeling especially emotional, but equally tenacious. I won’t rest until people understand the devastation of this disease. If your life hasn’t been touched directly yet, count yourself among the lucky ones, but also realize the odds are not in your favor. In the United States, someone develops Alzheimer’s every 66 seconds.

250x126-whiteBecause of my mom’s birthday, we’ve chosen October for our Annual Giving Campaign. Will you help Marilyn’s Legacy change the trajectory of this disease? Will you join the fight to end Alzheimer’s and to support the families currently living its torment on a daily basis? Those who know me well know I find it very difficult to ask for help, but this is one area where that is not the case. I need you. WE need you. Please consider making a tax-deductible contribution today by visiting http://marilynslegacy.org/donate. Thank you!


“ … at age 59, I was diagnosed with early onset Alzheimer’s after a serious head injury doctors say unmasked a disease in the making. Years earlier, I had a front row seat as Alzheimer’s devoured my maternal grandfather and my mother. Now it’s calling for me.”   ~Greg O’Brien, author On Pluto: Inside the Mind of Alzheimer’s

 

 

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The Long and Winding Road

Between 2009 and 2015, Marilyn’s Mighty Memory Makers have raised over $22,000 in the fight to #ENDALZ! To all who have supported us, THANK YOU!!

Marilyn, BA (before Alzheimer's)

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