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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Washington

June is Alzheimer’s & Brain Awareness Month

01 Wednesday Jun 2016

Posted by Ann Napoletan in Advocacy and Awareness, ALZ Assn - National, alzheimer's & brain awareness month, Caregivers, Cure Alzheimer's Fund, Fundraising, Help Stamp Out Alzheimer's, Helpful Resources, Life After Caregiving, Support system, USAgainstAlzheimer's, Volunteering, Washington

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#endalz, alzheimer's & brain awareness month, alzheimers, Alzheimers advocacy, alzheimers awareness, dementia

June is upon us, and with the month of the summer solstice comes Alzheimer’s & Brain Awareness Month! It’s the perfect time to get involved in the fight to end this horrific disease, and here are a few ways to do just that.

 

Know the Facts

Learn about Alzheimer’s and then help educate others!

  • Dementia is an umbrella term for a variety of symptoms that may accompany or indicate certain diseases or conditions. Alzheimer’s is a type of dementia. Other types include Lewy body dementia, frontotemporal dementia, vascular dementia, and mixed dementia.
  • Memory loss is just one aspect of Alzheimer’s. The disease also results in problems with executive function, spacial relationships, communication, and judgment. Other symptoms include anxiety, withdrawal, apathy, depression, agitation, paranoia, hallucinations, and delusions.
  • Every 66 seconds, an American develops Alzheimer’s disease.
  • 4 million Americans are living with Alzheimer’s. Of those, at least 200,000 are under age 65.
  • Alzheimer’s takes more lives than breast cancer and prostate cancer combined, yet research is still grossly underfunded.
  • Alzheimer’s is the 6th leading cause of death in the U.S. and the only one that cannot be prevented, cured, or even slowed.
  • In 2015, 15.9 million family and friends provided an estimated 18.1 billion hours of unpaid care for those with Alzheimer’s and other dementias.

Volunteer Your Time

photo-63Give of your time! Contact your local Alzheimer’s Association chapter to find out how you can get involved. If that isn’t in your wheelhouse, reach out to a nearby memory care community. I promise that what you give will come back to you tenfold (and then some!) every single time. No special talents needed. If you’re capable of sitting and holding someone’s hand, you’re qualified!!

Let Your Voice Be Heard

Add your voice to the growing movement calling for an Alzheimer’s semipostal (fundraising) stamp. Take just a moment to encourage the Postmaster General to move forward with a stamp that could raise millions of dollars for Alzheimer’s disease research. The breast cancer stamp has raised over $83 million since its inception! Click the following link to add your encouragement: https://www.uspsoig.gov/blog/putting-stamp-good-causes

You can also reach out to your elected officials, asking them to support increased funding for Alzheimer’s. Consider writing or calling to share your personal story; there’s no better way to underscore just how important an issue is than to put a human face on it. You have the power to do that. If you aren’t sure how to reach your officials, these sites will help:

  • United States House of Representatives
  • United States Senate

Reach Out

Do you know someone caring for a loved one who has Alzheimer’s or another form of dementia? Bring them dinner or offer to provide a couple of hours of respite care so they can have a break to do something they enjoy. Drop off some fresh cut flowers or mow their yard. Small acts of kindness go a long way in letting someone know they aren’t alone.

Likewise, if you have a friend or family member living with dementia, please take time to visit them – no matter what stage they are in. Remember that these are living, breathing human beings who need human contact and love as much as you and I. Even if they can’t communicate, they will feel your energy; even if they don’t recognize you, they will relish the company.

Make a Monetary Contribution

250x126-whiteMarilyn’s Legacy: A World Without Alzheimer’s is a registered 501(c)(3) non-profit organization dedicated to ending Alzheimer’s and supporting and advocating for family caregivers. Marilyn’s Legacy was borne of a desire to honor my mom’s life and ensure that her battle with this disease was not in vain.

We are partnering with UsAgainstAlzheimer’s and the Cure Alzheimer’s Fund, two non-profits that are recognized leaders in this space. It is very important to us that every dollar raised goes directly to the mission rather than salaries and other operational expenses. The founders of UsAgainstAlzheimer’s and the board of directors of the Cure Alzheimer’s Fund cover every dime of overhead ensuring that 100% of your contribution furthers the fight to END ALZHEIMER’S! When you support Marilyn’s Legacy, you can feel confident that the funds donated are being spent wisely.

To make a tax-deductible contribution, visit our donation page.

Join the Brain Health Registry

The Brain Health Registry is an easy way to contribute to research from the comfort of your home. Participants sign up on a website and complete several questionnaires regarding medical history, lifestyle, and current health.

Once the questionnaires are finished, participants are invited to complete a series of tests that might be likened to brain games. Each activity takes just a few minutes. At 3-6 month intervals, registry members receive email reminders to come back and complete additional activities. The hope is that people will continue to be involved for many years, as the longevity of participation helps researchers understand how our brains change over time.

The researchers behind the Brain Health Registry aspire to use the program to build out a pool, or registry, of potential clinical trial enrollees. The hope is that by collecting data on participants in this fashion, the right people can be assigned to studies faster, ultimately accelerating trials.

To join the Brain Health Registry, visit: http://www.brainhealthregistry.org/

Share This Post

Last but not least, share this post. Shout your message from the rooftops! Encourage your personal network to help #endalz! Remember that our collective voice is bold, powerful, and impossible to ignore. Together we can move our agenda forward and realize a world without Alzheimer’s!

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Alzheimer’s Semipostal Update: March 2016

08 Tuesday Mar 2016

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

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

It is often said there are two kinds of people; those who have been touched by Alzheimer’s disease and those who will be. If you are part of the former group, you know how critical it is that we explore every possible avenue in our quest to end Alzheimer’s and other forms of dementia.

Did you know there is a simple way to procure additional funding for Alzheimer’s research without increasing taxes, discretionary spending, or the federal deficit? It’s called a semipostal stamp.

What is a Semipostal Stamp?

Simply put, a semipostal stamp is a fundraising stamp. Postal customers have the option of purchasing these stamps in lieu of regular First-Class stamps, at a slightly higher cost, and the additional revenue is used to raise money for a specific purpose. Semipostal stamps provide an easy and relatively inexpensive way for people to show their support for a given organization or cause.

In 1998, the Breast Cancer Research stamp was issued as the first semipostal in United States history. Since then, it has raised almost $81 million to further breast cancer research.

The Save Vanishing Species semipostal was issued in 2011 and has since raised funds to support the Multinational Species Conservation Funds.

For an Alzheimer’s advocate, the obvious question seems to be, why don’t we have an Alzheimer’s semipostal to fund research? Ask Kathy Siggins and Lynda Everman and they will tell you it certainly isn’t due to lack of trying! These two ladies have spent countless hours campaigning to make it happen…

Kathy’s Story

Kathy Siggins knows Alzheimer’s all too well. Her husband, Gene, was just 57 when she began noticing small changes that worried her.

“My late husband began showing signs of needing more direction when driving to familiar places. Forgetfulness and repetitive questions followed. He always took care of our finances in a timely manner, however, as he began to struggle and wanted no help, our arguments intensified,” explains Kathy.

In 1988, dementia forced Gene into early retirement, and during the course of his illness, Kathy became a determined advocate. She began sharing their story in 1997, and when Gene died two years later, her passion and resolve increased. With that came an intense desire to raise awareness and help find a cure. Like so many grieving caregivers, she was lost, and in many ways, it was advocacy work that helped her find her way.

Lynda’s Story

Lynda Everman has spent most of her adult life as a caregiver. Her journey began 22 years ago when her father began showing signs of dementia. Just a few years later, her husband, Richard, was diagnosed with mild cognitive impairment (MCI) at age 57.

“We were told the conversion of MCI to Alzheimer’s disease could occur in as little as three or as many as six years. In Richard’s case, it was 12 years. As the years passed, I began to believe that we had beat Alzheimer’s disease, that we had arrested its course, and that we would live out our lives with inconvenience and infrequent atrocity, but not the deep and pervasive sadness of constant loss that is dementia. But I was wrong. We were no match for Alzheimer’s disease. No one is,” says Lynda.

Lynda and Richard shared what she describes as “an unshakable belief in the power of the individual to make a difference and affect positive change.” As the disease progressed, Lynda’s determination grew, and she began to speak out about their experience. Soon she was attending town hall meetings and advocacy trips to her state capital.

Birth of an Idea

Just eight months after losing her husband, Kathy was attending an advocacy seminar when she first heard about the Breast Cancer Research stamp; up to that point, Kathy hadn’t been aware of the semipostal program. Now that she knew about it, if there was a possibility for an Alzheimer’s stamp, she had to make it happen. She reached out to her contacts at the USPS, and with that, her quest for an Alzheimer’s semipostal began.

In the summer of 2000, President Clinton signed the Semipostal Authorization Act into law, which gave the USPS the authority to issue more semipostals. When an RFP was issued looking for candidates, Kathy was ready. Her proposal included almost 12,000 signatures along with letters from the Department of Health and Human Services, the Alzheimer’s Association, and the National Association of Retired Federal Employees.

Kathy explains, “On September 7, 2001, I visited the offices of Senator Barbara Mikulski and Rep. Edward Markey.  Each office presented me with a copy of the letter they had sent under separate cover to the USPS in support of my proposal. Sixteen members of the Congressional Task Force signed the letter from Rep. Markey.”

Less than two weeks after the RFP submission deadline, the tragic events of 9/11 took place and the semipostal program was temporarily suspended.

Ultimately, the program was cancelled, and today, Kathy’s proposal remains pending with the USPS. When the Citizen’s Stamp Advisory Committee told Kathy there wasn’t enough interest for an Alzheimer’s stamp, she set out to prove them wrong. Before it was all said and done, over 84,000 signatures had been collected.

By 2008, Kathy’s efforts and those of several key players in Washington had generated enough interest for the USPS to issue the short-lived Alzheimer’s Awareness Commemorative Stamp. Unfortunately, it went no further.

Meeting of the Minds

Meanwhile, Lynda had started her own semipostal campaign. Unaware of Kathy’s work, Lynda wrote letters to all of the living Presidents and First Ladies and anyone else she thought might have the influence needed to get the job done.

One day in 2012, while searching the Internet for information on the Alzheimer’s Awareness Commemorative Stamp, she ran across Kathy’s name for the first time. The two women with a shared passion first connected on Facebook and became fast friends.

The Alzheimer’s semipostal was introduced as a resolution in the 109th congressional session as well as the next three sessions, but it got no further. Finally, in 2013, Representative Edward Markey of Massachusetts, introduced the legislation as a bill; H.R. 1508, to provide for the issuance of an Alzheimer’s Disease Research Semipostal Stamp. Several months later, Senator Barbara Mikulski of Maryland introduced companion bill S. 1091 in the Senate.

Continuing their crusade, Kathy and Lynda wrote and hand delivered letters to every member of Congress asking them to co-sponsor the Alzheimer’s Disease Research Semipostal Stamp. Despite a valiant effort, the bill never made it out of committee.

Fast Forward:  114th Congress 2015-2016

In 2015, Congresswoman Maxine Waters (CA) and Congressman Chris Smith (NJ), Co-Chairs of the bipartisan Congressional Task Force on Alzheimer’s Disease, introduced Alzheimer’s Action Now. This legislative package is comprised of four bills intended to help families affected by Alzheimer’s. Included in the package is H.R. 3092, the Alzheimer’s Disease Semipostal Stamp Act. Work is underway to have a companion bill introduced in the Senate.

As of this writing, H.R. 3092 has 62 co-sponsors, which is but a tiny percentage of the 435 voting members of the House. In order to move the bill out of committee and to the floor for a vote, much, much more support is needed and that’s where you come in! We need YOU to RAISE YOUR VOICE!

Call Your Congressperson

Look for your representatives’ name here to find out if they have already co-sponsored H.R. 3092. If you don’t see their name, CALL and ask them to co-sponsor the bill.

Dial the U.S. Capitol switchboard at (202) 224-3121, and ask to be connected to your representative’s office.

When calling the office, ask to speak with the Health Legislative Aide. Be certain to let him or her know you are a constituent, as they often track the issues most important to their voters. Tell the staffer how strongly you feel about H.R. 3092 and ask for the representative’s co-sponsorship. Alternatively, write a letter requesting support for the bill; remember that sharing your personal story will help convey the human side of the issue.

If you don’t know the names of your representative(s), you can get that information, as well as the direct office phone number by visiting: http://www.contactinghecongress.org.

Contact the Postmaster General of the United States

Our friends at UsAgainstAlzheimer’s, along with their partners and allies, are also calling for an Alzheimer’s Awareness and Research stamp. To that end, they have created a simple way for you to ask Postmaster General Megan Brennan to issue a semipostal that will help fund the search for a cure. Click here to add your name; it takes less than a minute and will make a big impact!

Once you’ve done that, share the link (http://actions.usagainstalzheimers.org/p/dia/action3/common/public/?action_KEY=18465&track=at_fb_03062016&tag=at_fb_03062016&okay=True) widely via email and social media!

The time is NOW! All avenues for funding must be explored until all possibilities are exhausted. Alzheimer’s is the only cause of death in the top 10 in our country that cannot be prevented, cured, or even slowed. Without a medical breakthrough, a projected 14 million individuals will be living with the disease by 2050, and the cost to our country will rise to an estimated $1.1 trillion.

The numbers illustrate a compelling urgency and dire need for action, yet Alzheimer’s remains grossly underfunded as compared to cancer, heart disease and HIV AIDS. Please join the fight by taking action. Imagine the power we could harness if each of us just did one thing!

 

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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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The Long and Winding Road

Marilyn, BA (before Alzheimer's)

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