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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Help Stamp Out Alzheimer’s

Guest Post: Bonds, License Plates, & Semipostals

25 Thursday Feb 2016

Posted by Ann Napoletan in Advocacy and Awareness, Face of Alzheimer's, Guests, Help Stamp Out Alzheimer's, Inspiration, Life After Caregiving, USAgainstAlzheimer's, Washington

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alzheimers, alzheimers advocate, alzheimers funding, alzheimers semipostal, dementia, help stamp out alzheimers

Image courtesy of Lynda Everman

I’ve often said that when your life is touched by Alzheimer’s or another form of dementia, you are automatically admitted to “the club.” It’s a club you never knew existed and a membership no one would ever seek out on their own. However, it doesn’t take long to realize your membership card came with guaranteed friendships with some of the most compassionate, inspiring people you’ve ever met.

For me, one of those people has been Lynda Everman, Founding Member of ActivistsAgainstAlzheimer’s, ClergyAgainstAlzheimer’s, WomenAgainstAlzheimer’s, and the Faith United Against Alzheimer’s Coalition. Lynda is like the energizer bunny; she never stops, and her determination to drive toward a world without Alzheimer’s is limitless.

Lynda also founded Help Stamp Out Alzheimer’s. She and Kathy Siggins have worked (and continue to work) tirelessly to urge lawmakers to pass the Alzheimer’s Disease Semipostal Stamp Act (H.R. 3092) that will require the issuance and sale of an Alzheimer’s semipostal (fundraising) stamp. Look for an upcoming post that will include more information on this project, including ways you can help.

I’d like to thank Lynda for allowing me to post this poignant essay. About the piece, Lynda says, “I’m moved to share with you this essay that I wrote some time ago as, more than anything, it sums up my philosophy on what we must do to end Alzheimer’s. . .and hopefully explains some of my tenacity for the semipostal.”

 

Bonds, License Plates, & Semipostals

Image courtesy of Lynda Everman

My husband was in the U.S. Marine Corps for only 4 years, but they were transformative years. The eldest son of a Conscientious Objector, he was 17 when he enlisted and was discharged 4 days short of his 21st birthday. He was a generous man, a man of principal, an innovator, a contributor, and very protective of all that he loved, especially his wife. One of his expressions was, “Nothing bad will ever happen to you on my watch.” Unfortunately, some things are beyond the control of even the best of men. For 15 years Alzheimer’s attacked the very fiber of our lives and claimed it’s prize at his death in March of 2012.

Richard was a Principal Systems Analyst for the University of California. A high school drop out and a voracious reader, he designed & set in place student information systems that were adopted nationwide and are still intact & vigorous today. In a bold and unconventional move in the 80s, he took the University of California, Irvine off the mainframe that was shared with the 5 southern campuses at UCLA and introduced personal computers to our campus. When his colleagues on the other campuses saw that it worked (and that he didn’t get fired!), they quickly followed.

Another of his favorite expressions was, “How you perceive a problem is how you solve it. Perception is reality.” It is this expression that brings me to this discussion of bonds, license plates, and semipostals.

I’ve asked my Senators and Congresswoman to support a minimum increase of $400 million in funding for Alzheimer’s research and patient & caregiver programs in FY 2017, as well as all aspects of the Alzheimer’s Action Now initiative. We’ve all read it: the federal government spends roughly $270 on Alzheimer’s care for every dollar it spends on Alzheimer’s research. So, unless and until we give our researchers the funds they need to achieve success at the bench and in our clinics, we will continue a downward spiral of needless suffering and loss.

Let me urge all who are reading this to move away from the philosophy of paucity and embrace the belief that we must use EVERY means available to defeat this formidable opponent. Of course we will continue with our individual and collective efforts; we will continue to walk, row, bike, hike, climb mountains, knit caps, bake brownies, have garage sells. . .and all manner of activities to raise awareness and funds. But Alzheimer’s is relentless and we, as advocates, must be as well. So we must identify and use any and all viable funding sources going forward: at the municipal level, at the state level, and at the federal level.

There are many in our community who believe that if we ask for one thing, we lessen our chances of asking for and receiving something else. I have to disagree. Of course, there is the risk that our requests will fall upon deaf ears; but there is also the hope that our message will get through. This is a huge and serious problem that requires our best efforts to protect the very essence of what makes us human: our memories. Anyone who has loved another, whether it be a spouse or partner, a child, a sibling, a parent, or a friend knows that we would stop at nothing to protect that individual. I know I would do that for those I love and that Richard would have done that for me. As advocates we must do no less. Let’s pull out ALL the stops and implement legislation and programs for bonds, license plates, semipostals and any and all initiatives that will decisively and quickly advance our goals and leave a legacy of a world WITHOUT Alzheimer’s!

Rest in peace, my beloved husband, and know that I will not rest until a cure is found! ‪#‎ENDAlz ‪#‎SemperFi

~ Lynda Everman

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We Need YOU!

11 Tuesday Mar 2014

Posted by Ann Napoletan in Advocacy and Awareness, Facts & Figures, Fundraising, Help Stamp Out Alzheimer's, Research, Washington

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alzheimers, Alzheimers advocacy, alzheimers disease research semi postal stamp, alzheimers funding, alzheimers legislation, dementia, help stamp out alzheimers

07.19.15 IMPORTANT UPDATE: The Alzheimer’s Disease Semipostal Stamp has been reintroduced as part of the Alzheimer’s Action Act. If passed, this would allow for the voluntary purchase of a stamp that would raise funds for critically needed research. Please write or call YOUR representatives and urge them to Help Stamp OUT Alzheimer’s by co-sponsoring HR 3092!

Big news today from Washington!!

Our sincere appreciation goes to Senator Pat Toomey (R-Pa) as he officially declares his support for the Alzheimer’s Disease Research Semipostal Stamp.

According to a press release issued today, Senator Toomey had this to say about the proposed bill.

This is a simple but effective way to help raise funds to research a cure for Alzheimer’s. Most people I meet are familiar with the disease. But they might not know just how widespread it is in our state. Pennsylvania has the fifth most people suffering from Alzheimer’s in the nation.

This is a truly tragic illness that robs its victims of one of their life’s greatest possessions – their memories. Working together with my colleagues in Congress, I am committed to fighting this disease and finding a cure.

The news has been ablaze this past week regarding the recent Rush University Medical Center study which found deaths from Alzheimer’s Disease could number up to SIX times previously report numbers. According to the study, it’s likely that over 500,000 Americans die from AD and related forms of dementia every year, a number exponentially higher than the 84,000 reported in 2010. This makes Alzheimer’s and other dementias the THIRD leading cause of death in our country, behind only cancer and heart disease. Continue reading →

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Call to Action: An Easy Way to Help

25 Tuesday Feb 2014

Posted by Ann Napoletan in Advocacy and Awareness, Fundraising, Help Stamp Out Alzheimer's, Research, Washington

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alzheimers, Alzheimers advocacy, alzheimers disease research semi postal stamp, alzheimers funding, dementia, stamp out alzheimers

Commemorative Stamp07.19.15 IMPORTANT UPDATE: The Alzheimer’s Disease Semipostal Stamp has been reintroduced as part of the Alzheimer’s Action Act. If passed, this would allow for the voluntary purchase of a stamp that would raise funds for critically needed research. Please write or call YOUR representatives and urge them to Help Stamp OUT Alzheimer’s by co-sponsoring HR 3092!

You may recall my recent post regarding the Alzheimer’s Disease Research semipostal stamp. Here is easy another way for you to take action and make a difference!

This comes from the Help Stamp OUT Alzheimer’s page on Facebook, and I’m asking for your help. Please consider taking just 10 or 15 minutes to send an email and then share with a friend or friends and encourage them to do the same.  If you aren’t on Facebook, leave your zip code in a comment here, and I’ll get the the HLA’s contact information for you.


We need YOUR help in writing to ALL members of the House to ask them to sign on as COSPONSORS to the Alzheimer’s Disease Research Semipostal Stamp!

It’s simple:  Continue reading →

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The Long and Winding Road

Marilyn, BA (before Alzheimer's)

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