Baltimore, November 30, 2017 — “The Postal Service is proud to issue this stamp today to help raise public awareness of Alzheimer’s,” said Postmaster General Megan J. Brennan. “Proceeds from its sale will help support urgently needed medical research into this incredibly debilitating disease.”
The ceremony to unveil this fundraising stamp for Alzheimer’s was simple and direct.
Getting to that day, however, was anything but.
It would not have happened without the iron-willed tenacity of two women who cared for their stricken husbands for too long to keep count. Altogether, the two clocked a combined 27 years before seeing their dream of this stamp become reality.
Hundreds of emails and letters to the nation’s top elected officials; shoe leather worn thin walking the halls of Congress; treks into the bowels of the postal bureaucracy; scores of rejections reversed through artful diplomacy; 84,777 petitions signed from all over the country. This is but a sketch of the effort needed to get this Alzheimer’s stamp approved and printed.
If you wonder how two women who had been wounded and hurt by a debilitating disease could make such an immense difference, meet Kathy Siggins and Lynda Everman. You’ll soon see, though, that this colossal effort is only the first phase of their endgame.
But before sharing Kathy’s and Lynda’s stories, let me give you a quick rundown on this Alzheimer’s stamp. Officially it’s called a “semipostal” stamp, which means it’s a fundraising stamp. Its first-class rate currently is 65 cents, with approximately one dime (net of all costs) directed to Alzheimer’s research via the National Institutes of Health (NIH). 500-million stamps were printed for its two-year life. If there’s not enough interest, the Postal Service can pull the stamp before two years. It can be found at most post offices or at the online Postal Store or by calling toll free 800-782-6724.
At the stamp’s unveiling ceremony, Congressman Elijah Cummings (D-MD), who lost a neighbor and brother-in-law to Alzheimer’s, spoke directly to Kathy: “I want to thank you, Ms. Siggins. I know you worked a long time for this. It’s hard. I know it’s hard. You know what you did, don’t you? You took your pain and turned it into a passion to do a purpose. You took the pain you were feeling and then went on out and did things that will affect generations yet unborn.” Kathy was given a standing ovation. (You can see the ceremony by clicking here. Mr. Cummings’s address begins at 18:00 and his remarks to Kathy at 27:00.)
In the beginning there was only Kathy Siggins. She and her husband Gene lived a normal middle class life in Mount Airy, MD, an hour’s drive north of Washington, D.C. She and Gene met while both were working in the headquarters of the U.S. Postal Service (USPS), from which she resigned in 1983 to raise her children.
But in 1985 that “normal” life began to change. “That was when I noticed some changes in Gene,” says Kathy. He was 57. Three years later he took early retirement. But he wasn’t officially diagnosed for another two years, in 1990 when he was 62.
“We’d never heard the word Alzheimer’s before. As a caregiver, I felt helpless and lost; my life was consumed with caring for my husband.”
While still caring for Gene, Kathy began to ease into advocacy, helping start a walk team in 1994. Since then, she personally has raised more than $92,000. “In 1997, when I started sharing our story, my son asked me, ‘Why do you want to open our lives to the public? Do you think one person can make a difference?’”
“I said something like, ‘I don’t know but if we don’t talk about it, no one will ever know what it’s like to live with this disease.’” Not long afterwards, Kathy made her first visit to Capitol Hill in 1998. “And I haven’t stopped since.”
Seven months after Gene’s death in January 1999, Kathy attended an advocacy forum that began to brainstorm on ways to raise awareness and serious money for Alzheimer’s. It was there that someone mentioned a stamp that was raising money for breast cancer research. “It didn’t sound right to me,” says Kathy. “I worked at the post office and had never heard of a stamp that was raising money for research.”
“I decided to check into it, and if true I wanted a stamp for Alzheimer’s.” The stamp for breast cancer research was dedicated in 1998, and to date it’s raised more than $87-million.
She visited the USPS official who replaced Gene as the Director for Procurement. Kathy quickly learned that the Citizens Stamp Advisory Committee receives approximately 50,000 requests each year for dedicated stamps. Undaunted, she began a letter-writing campaign only to learn that the committee had already rejected a semipostal stamp. “I was told there’s not enough national interest in Alzheimer’s.”
“I’m going to show them that there is,” Kathy vowed, and started her petition campaign.
Little did she realize that the road ahead would consume 18 frustrating years of her life. In a recent TV interview: “I was told ‘No’ an awful lot of times,” said this proud mother of eight and soon-to-be grandmother of 25. “And the disappointment…I went through a lot of disappointment each time people said ‘No.’”
In the meantime, Lynda Everman was living across the country working at the University of California-Irvine as a Human Resources Consultant. Her husband Richard also worked there as the Director of Applied New Technologies. In 1997 Richard was diagnosed with mild cognitive impairment (MCI), which puts one at an increased risk for Alzheimer’s. He was 57. “There’s nothing mild about it,” says Lynda.
All told, between caring for Richard and her father, who began showing signs of dementia in 1994, Lynda was a caregiver for 18 years. She had given no thought to being an advocate. She didn’t have time, plus “we both were introverts and very private people. I was intent on protecting Richard’s privacy and his dignity. We were moving through a situation that was too painful to address in public, and I wanted to do nothing that would add to his discomfort.”
As virtually every caregiver knows, to say this was a difficult period is an understatement. “When I think back to those years,” says Lynda, “I don’t think in terms of ‘caregiver burden.’ I think of a deep pervasive sadness.”
Subsequently, in late 2002, Lynda and Richard moved to Maryville, TN, south of Knoxville, and in 2009 he entered an assisted living facility (ALF). “By then it had become apparent to me that Alzheimer’s could claim one or both of our lives. I knew I could no longer sustain my level of care.”
“It was the most wrenching decision of my life. I basically had to move Richard ‘behind his back’ without telling him of my intentions.”
When Richard died several years later, Lynda says she posted their picture on Facebook with these words, “Rest in peace, my beloved husband, and know that I will not rest until there is a cure.”
“I intend to keep my promise.”
Not long after moving Richard into the ALF, Lynda slowly began to pivot from her shell of privacy to public advocacy. That was early 2010. Besides public speaking and taking trips to the state capitol, she also began her own campaign for an Alzheimer’s semipostal stamp.
Lynda was inspired by Susan G. Komen’s sister who almost singlehandedly started the breast cancer movement. So Lynda began a letter writing campaign to anyone she could think of. “I wrote to all the living Presidents and First Ladies, and to every celebrity I could think of. I incessantly promoted the breast cancer stamp as a model for an Alzheimer’s stamp. I didn’t know what I was doing, but I said to myself, ‘Oh well, I’ll just do it.’”
One day Lynda went to the local post office. “And being something of a smart aleck, I asked to buy an Alzheimer’s stamp. I knew full well that there was none available. To my surprise, the clerk said I could probably Google that in their ‘retired collection.’” She went online and found Kathy Siggins’s name associated with a short-lived commemorative stamp (non-fundraising) for Alzheimer’s, which had been issued in 2008. Importantly, she saw that Kathy also was pursuing a semipostal stamp.
Lynda found Kathy on Facebook and asked to be her ‘friend.’ That was April 2012. “I’m generally shy,” says Kathy, “and I don’t like to respond to such requests from people I don’t know.” But for some reason she did. “That turned out to be one of the best ‘friend requests’ I’ve ever had.”
They agreed to call each other that night. “Lynda and I immediately clicked. We talked for two hours. Finally, I met someone who had my passion!”
It was about this time that Lynda created the Help Stamp OUT Alzheimer’s Facebook community to gain visibility. (Twitter link @helpstampoutalz). “We needed the support of other individuals as well as the major advocacy organizations in order to make substantial progress.”
In 2013 Lynda visited Kathy. “We wrote and delivered 60 letters to members of the Bipartisan Congressional Task Force on Alzheimer's Disease and other influential committee members.”
May 2013: “Kathy and I blitzed the Capitol,” says Lynda, “hand delivering personal letters, telling anyone who would listen that we were caregivers who lost our husbands to Alzheimer’s and who were now advocating for increased funding for Alzheimer’s research and for a fundraising stamp.”
“Kathy even followed members of Congress into the elevators and stairwells so we could talk to them!”
Kathy calls herself the “tortoise” and Lynda the “energizer bunny.” Over the course of two decades, Kathy has learned every nook, cranny, and corner of influence in the halls of Congress, at the USPS headquarters, and at the NIH. (“I don’t know every nook and cranny,” Kathy says, correcting this writer.) Lynda, in addition to partnering with Kathy, is a founding member of three national networks, all under the umbrella of UsAgainstAlzheimer’s: ActivistsAgainstAlzheimer’s, WomenAgainstAlzheimer’s, and ClergyAgainstAlzheimer’s. Kathy joined Lynda in these advocacy groups. Both women have remarried, Kathy to JD Brooks and Lynda to Don Wendorf.
Along the way, Kathy and Lynda were guests on advocacy forums, webinars, and seminars. And they ultimately gained the support of the major national advocacy organizations, including the Alzheimer’s Association; the Alzheimer’s Foundation of America; the American Academy of Neurology; UsAgainstAlzheimer’s; and the National Active and Retired Federal Employees Association (NARFE).
So what’s next for these two warriors?
First, they say, they are doing everything in their power to promote this Alzheimer’s semipostal stamp.
“The sale of this stamp is so important,” says Kathy.
Here’s Lynda’s perspective on the stamp’s art design: It’s both appropriate and symbolic. It features an older woman with dementia, while a caregiver rests a hand on her shoulder. The clouds signify the confusion and challenges of Alzheimer’s and dementia while the sunlight signifies hope. Those of us who have experienced loved ones with dementia understand the juxtaposition of light and dark, despair and hope, helplessness and determination. It is our hope that by facing this disease together and advocating for better care, treatments, prevention, and a cure that all of us will have the strength to reach these goals.
The two believe the stamp’s success could greatly influence Congress to pass legislation that would extend the life of the semipostal for an additional six years, similar to the reauthorization of the breast cancer stamp. That would help deliver more research dollars while continuing to raise the public awareness of Alzheimer’s and its destructive aftermath.
The effort and organization required to make that congressional bill succeed is another story unto itself. And Lynda and Kathy are well along that path.
When Kathy went public with her family’s story in 1997, the NIH budget for Alzheimer’s research was approximately $325-million; it’s now $1.4-billion. The “ask” today is for $2-billion, which researchers say is the minimum needed to accomplish the ambitious goals of the National Plan to Address Alzheimer’s Disease, one of those goals being “to prevent and effectively treat Alzheimer’s disease by 2025.”
I asked Kathy and Lynda what those reading this post could do.
Their response: “We would love for every advocate, caregiver, family member, and friend who has been touched by this disease to buy the Alzheimer’s stamp and to use it exclusively on all your mail. Purchase extra sheets to give as gifts to raise awareness that this disease is affecting one in every three U.S. families. There has been too much suffering by too many for too long. It’s only when we’re able to bring this conversation out of the shadows and into the national spotlight that we will be able to make the progress that is sorely needed toward better care, treatment, and prevention.”
Thank you, Lynda and Kathy, for sharing your inspiring stories and for taking the lead that you have. If interested, you can reach Lynda by emailing her at firstname.lastname@example.org, and Kathy at email@example.com. Subject line: Postage stamp.
And thanks to you who are reading this for doing what you’re able to do.
Let’s just do it!
Yesterday, Tuesday January 30th, Bill Gates was interviewed by Maria Shriver on NBC’s Today show. During the four-minute interview, Gates discussed what he wants to see done with the $100-million he’s donating to Alzheimer’s research and advocacy. Gates also revealed for the first time that a driving motive for his interest is his 92-year-old father who’s been diagnosed with Alzheimer’s. Ms. Shriver’s father, Sargent Shriver, died from the disease.
PS1 I’m sticking this Alzheimer’s stamp on all my personal and business mail.
PS2 As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here.
PS3 WFTS-TV 28, ABC Action News Tampa Bay recently interviewed me for a five-minute segment. If interested, you can click here.
PS4 My book A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s can be ordered from any bookstore or found on Amazon.