If a phrase could capture the spirit of Kathy Siggins, it would be ‘passionate persistence.’ Through her efforts, the U.S. Alzheimer’s stamp became a reality. But the road to that reality was a long one, inspired by the personal pain of caring for her husband who lived with Alzheimer's disease for more than a decade.
The Purpose Behind the Passion
Kathy Siggins met her late husband Gene when they were both working in procurement at the USPS Headquarters in Washington, D.C. Their friendship grew to love, and they were married in March of 1978. The couple quickly settled into their house in Mount Airy, MD, where Kathy still lives today.
When he was 59, Gene expressed concerns to his family doctor about problems with his short term memory. He was referred to the National Institutes of Health (NIH) for extensive testing before taking part in a 14-week clinical trial, and was ultimately diagnosed with Alzheimer’s in 1990, at the age of 62. “We’d never heard the word ‘Alzheimer’s’ before. I felt helpless,” Kathy says.
Gene and Kathy argued about the coins, belts and golf balls she would find in their bed each night. “He began hiding bills, and one night, his wandering
led to a K-9 unit and helicopter search. When helping him brush his teeth and shave, he would recognize me in the mirror and give me a big smile and a thumbs up, then turn and look at me with a blank face.” The heartbreaking end came when Gene had a seizure on Kathy’s 50th birthday, never returning home. Gene passed away on January 24, 1999, 10 days before his 71st birthday.
A Lifelong Mission
During Gene’s final days, as the family kept a vigil, Kathy told her daughter that God had taken them all on this journey for a reason. “I knew in my heart that I had to do something big, like a bike ride across the nation, to bring attention to this horrible disease. That changed when I went to the gym and rode the stationary bike for only five minutes! Instead, I attended an advocacy event in Maryland.”
That advocacy event is where Kathy first heard about a stamp that was raising money for breast cancer research. “As soon as I heard this, I wanted a stamp for the Alzheimer’s cause. I needed to make this happen. I made the trip to USPS headquarters and was informed that USPS gets 50,000 suggestions a year for what to feature on U.S. stamps, including various charitable causes. I knew I would need to fight a new fight to make this idea a reality.”
A Stamp for the Cause
The Alzheimer’s stamp would not have come to fruition without the Alzheimer’s Association’s support of the bipartisan Alzheimer’s Disease Semipostal Stamp Act to provide for the issuance of an Alzheimer's Disease Research Semipostal Stamp, and the persistence of Kathy and Lynda Everman, a fellow Alzheimer’s advocate who has also experienced the pain of caring for her husband with Alzheimer’s. The work the duo put into making the Alzheimer's stamp a reality included hundreds of emails and letters to the nation’s top elected officials and deep-dives into the world of postal bureaucracy. They also got 84,777 signatures from all over the country in support of the stamp.
At the stamp’s unveiling ceremony in 2017, Congressman Elijah Cummings (D-MD), who had lost loved ones to Alzheimer’s, spoke to Kathy directly. “I know you worked a long time for this. It’s hard. I know it’s hard,” he said. “You know what you did, don’t you? You took your pain and turned it into a passion for a purpose.”
“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?’” Kathy says. “I wasn’t sure if I could, but I knew that if we didn’t talk about it, no one would know what it’s like to live with this disease.
Never one to raise my hand in school or stand up in front of a crowd to speak, when I was asked to testify at the Maryland General Assembly in 1998, when I began to speak, I broke down crying after saying my name and who I was fighting to end Alzheimer’s for.” As a quiet fell across the room, and a friend started speaking for Kathy, she realized that she was the only one that could tell her story. “I composed myself enough to continue, which is something I had to do both for Gene and for myself.”
Joining the National Active and Retired Federal Employees Association
Another way Kathy pushes past the pain to take action is through the National Active and Retired Federal Employees Association (NARFE). Since NARFE’s founding in 1921, their mission has been to defend and advance the earned pay and benefits of America’s civil servants.
Kathy was told that she could join NARFE as Gene’s surviving spouse, as she did not retire from USPS; she resigned in 1982 to care for her children. “I was offered an honorary membership to learn more about NARFE, and quickly realized I made the right decision,” Kathy says. “They protect my survivor’s benefits, and Alzheimer’s was their cause of choice. It was a win-win.”
The Alzheimer’s semipostal (fundraising) stamp is a first-class, 65-cent stamp, with approximately one dime (net of all costs) directed to Alzheimer’s research via the National Institutes of Health (NIH). Learn more by calling 800.782.6724 or visiting the link below.
In 2003, NARFE’s magazine published an article about Kathy with a copy of the U.S. Alzheimer’s stamp petition that members could tear out and reproduce to help collect signatures. Through this effort, NARFE members helped collect nearly 20,000 of the 84,777 signatures supporting the Alzheimer’s stamp. “This is just one more way we spread the word, and the NARFE community was a huge part of pushing this goal forward.”
Speaking Out for Family
The Alzheimer’s stamp is available today, with an inventory of more than 491 million. As of December 2020, the USPS has sold 8.9 million stamps, raising $1.1 million for Alzheimer’s research. “For every stamp sold, 10 cents goes to the cause. Imagine how much more we could raise if everyone buys a sheet of 20 for $13! We could raise an additional $49 million for Alzheimer’s research at the NIH.”
When Kathy first publicly shared her Alzheimer's story in 1997, the NIH budget for Alzheimer’s research was approximately $325 million. Today, it is more than $3 billion. The work of the Alzheimer's Association, the Alzheimer's Impact Movement (AIM) and our steadfast advocates helped make these increases a reality. “Advocate stories are key, and I share mine every chance I get,” Kathy continues. “My husband was a kind, respected man, and a wonderful husband and provider. I will be a passionate advocate for us both for as long as I need to.”
Today, Kathy’s advocacy efforts show no signs of slowing. “I would love for every advocate, caregiver, family member, and friend who has been touched by Alzheimer’s disease to buy the Alzheimer’s stamp and use it exclusively on all their mail. 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 needed toward better treatment, care and prevention.”
Looking ahead, Kathy can’t wait to advocate at the 2022 Alzheimer's Impact Movement Advocacy Forum in Washington, D.C., eager to once again be alongside fellow advocates as they share their Alzheimer’s stories with the nation’s leaders. “I didn’t choose this Alzheimer's journey, but I choose to continue as an advocate for the sake of my children, my grandchildren and generations yet unborn,” she says. “I am in this fight for life.”
About: In addition to her dedication to making the Alzheimer's stamp a reality, Kathy also helped NARFE start a pilot team for the Walk to End Alzheimer’s in 2016, and as of 2019, funds raised through the walk now support the full mission of the Alzheimer’s Association and are credited to the national goal of $14 million by 2022 for NARFE-Alzheimer’s Research. “I’m very proud that in 2020, our national teams raised more than $65,000 for the Walk to End Alzheimer’s,” Kathy says. 2020 marked Kathy’s 27th walk, as she previously was involved in the Alzheimer's Association Memory Walk, which preceded the Walk to End Alzheimer’s.
Kathy is married to JD Brooks, who she married in 2006, and proud mom to Ann, Robert and Michael Ellis, and stepmom to Gene Jr. and Kimberly Siggins, and Jim, Kelly and Katie Brooks.