I was a caregiver for my dad
with vascular dementia and my late husband, first with mild cognitive
impairment and later with Alzheimer’s, from 1994-2012. I was sad to learn that, while Alzheimer’s
had first been identified in 1906, that little progress had been made to find
an effective treatment, means of prevention, or a cure and I felt, and still
do, that research was key to unlocking the secrets of this very complicated and
very cruel disease.
I was aware of and for years
had purchased the Breast Cancer Research (BCR) Semipostal Stamp - the first
semipostal in U.S. history - which was congressionally mandated and first
issued in July 1998. The word “semipostal” refers to a stamp that not only
raises awareness, but also raises funds for causes that have been determined to
be in the national public interest. As of September 30, 2018 sales from the BCR stamp exceed $88.1 million with 70 percent of the net
amount raised given to the National Institutes of Health and 30 percent given
to the Medical Research Program at the Department of Defense.
I wanted a semipostal for
Alzheimer’s for a number of reasons: to raise public awareness, to honor the
memory of those we’ve lost to Alzheimer’s and other dementias, to show our
solidarity and support of those still struggling, and to raise critically
needed funds for research - one stamp at a time! With over 5 million people
living with dementia in the United States and over 16 million unpaid
caregivers, I felt it was something each of us could do and, together, it would
have a cumulative, positive effect. One of the phases I am fond of saying is,
“Individual efforts make a collective difference.”
2 - How did you get the stamp
established?
This is a very long and
complicated story going back to 1999 with many twists and turns. I hardly know where to start and what to
include so I will just say that the Alzheimer’s stamp is the result of almost
18 years of tireless effort on the part of fellow advocate, Kathy Siggins and
about 9 years of effort on my part. What I thought would be easy was anything
but.
I began my campaign in 2009
writing to the “Friends of the National Alzheimer’s Project Act” and was
directed to the Citizens’ Stamp Advisory
Committee. Each year, the Postal Service receives thousands of letters and
petitions from the American public proposing stamp subjects. Established in
1957, the Citizens’ Stamp Advisory Committee (CSAC) reviews all of the
proposals and selects stamp subjects that will be of enduring interest to large
segments of the American population. The Postal Service relies on CSAC to
produce a balanced stamp program of approximately 25 – 30 stamp subjects each
year. That was a starting point and
basically got me nowhere. I didn’t know at that time, that to be successful, I
would need to have legislation introduced in both the House and the Senate and
broadly co-sponsored by members from both sides of the aisle. Nonetheless I
began to write what became thousands of letters and emails to any and all I
could think of who might help me advance this initiative.
In 2012 I was fortunate to find
out about and connect with Kathy Siggins who had successfully led the national
campaign for the now retired Alzheimer’s commemorative stamp. We joined forces
and continued and are still continuing to pursue a congressionally mandated
stamp. We currently have legislation pending in both the House (H.R. 2973 with
130 co-sponsors) and the Senate (S. 2208 with 17 co-sponsors) which, if passed,
would allow for the semipostal to be extended for six years. This is the 7th
time since 2005 that legislation has been introduced in the House and the 5th
time in the Senate. If these bills are not passed and signed into law by the
end of December, we will have to start this process over yet again the 116th
session of Congress. This is most likely what will happen.
But in 2016 we saw an opening
when the Postal Service called for public comments regarding the reinstatement
of the Semipostal Authorization Act which, in essence, gives the Postmaster
General the discretionary authority to issue semipostal stamps - under, I might
add - very precise guidelines. We mounted a national campaign and engaged many,
many fellow advocates and the major advocacy organizations - Alzheimer’s
Association, Alzheimer’s Foundation of America, American Academy of Neurology,
National Active and Retired Federal Employees Association, and
UsAgainstAlzheimer’s - to join us in endorsing and advocating for this. We were
successful and the first ever Alzheimer’s Disease Research Semipostal Stamp was
unveiled, dedicated, and issued on November 30, 2017.
So the Alzheimer’s stamp is
different from the Breast Cancer stamp in that it is not congressionally
mandated but was issued under the U.S. Postal Service’s discretionary program.
Under the provisions of this program, the Postal Service will issue five
semipostal stamps over a 10-year period, with each stamp to be sold for no more
than two years. The Alzheimer’s semipostal stamp is the
first and will be sold through November 2019 followed by a Post-Traumatic
Stress Disorder (PTSD) semipostal stamp to be issued in 2019.
3 - How much money has it
raised and how much money from the proceeds goes to AD research?
The
price of a semipostal stamp pays for the First-Class single-piece postage rate
in effect at the time of purchase (currently 50 cents) plus an amount to fund
causes that have been determined to be in the national public interest. The
Alzheimer’s stamp currently sales for 65 cents each. By law, revenue from sales
(minus postage and the reasonable reimbursement of costs to the Postal Service)
is to be transferred to a selected executive agency or agencies. The funds from
the Alzheimer’s Disease Research Semipostal Stamp will go to the Department of
Health and Human Services, the federal agency that funds Alzheimer’s research,
and will be designated to NIH.
As of September 30, 2018, 4.5
million stamps have been sold to raise $626,000 for National Institutes of
Health funded dementia research.
4. How can we KEEP the stamp
going? How can we extend its use in the
postal service?
The first thing you can do is
buy it, use it, promote it, and give it as gifts. With National Alzheimer’s
Awareness Month and National Caregivers’ Month (November) and the holidays
quickly approaching, this is an excellent time to do all of the above. For it
to have any chance of being reissued or extended, we must prove that it is
something that the public values, wants and uses.
You can also write to your
representatives (one congressperson and 2 senators) and tell them why it is
important to you that the stamp be extended and ask them to co-sponsor existing
legislation and to find a way to get that legislation out of committee, passed,
and signed into law.
If possible, I also encourage
visiting your representatives when they are at home - also called “in
district.” They often have town halls or public meetings where the public is
invited and encouraged to voice their concerns and issues. If we don’t speak
up, they won’t know what’s important to us!
5. Please explain the design of
the stamp? What does it represent?
The
artwork for the stamp shows an older woman, the artist’s aunt who had dementia,
in profile with a caring hand (his wife’s) on her shoulder with the suggestion
of sunlight behind her and clouds in front of and below her.
The
artwork is both poignant and highly symbolic. The clouds symbolize the
confusion of dementia and the sunlight signifies hope. The original
commemorative stamp had similar artwork with the woman facing left. The
semipostal has the woman facing right to signify our progress towards greater
awareness, better treatments, more compassionate care, research for prevention
and, hopefully, a cure. Those of us who have or had loved ones with dementia
understand the juxtaposition of light and dark, despair and hope, helplessness
and determination as we face or faced this journey together. I hope that this
stamp will draw attention to the plight of the 5.7 million Americans living
with Alzheimer’s and their 16.1 million unpaid family members and encourage
each of us to do our small part in the effort to END Alzheimer’s.
6. How can we help you?
I think it would be so cool if
kids began a letter writing campaign - thank you letters, words of
encouragement and support to others facing difficulties, notes and cards
acknowledging special events and occasions. Stamp them with an Alzheimer’s
stamp and tell the recipient why you are using the stamp. Include a couple for
them to use in their correspondence so you “pay it forward.” Think how many
hearts would be uplifted by this simple act. My late husband, in the throes of
dementia, put cards and letters he received in his pockets and carried them
with him. Each time he pulled one out to read it, I imagine that his day was
brightened and he felt less alone.
7. What advice do you have for
kids who want to become advocates?
You are never too young or too
old to make a difference. Hailey is 11 and I just celebrated my 72nd birthday.
It’s important for each of us to tell our personal stories, how our families
are and have been impacted by dementia, and what our personal hopes are. I love
the stamp as it fits so well with my belief that we must use EVERY means
available to stop this disease and, just as, no act of love is ever wasted, no
act of advocacy is every wasted. It is our job to bring Alzheimer’s and other
neurodegenerative disorders out of the shadows and into the public spotlight.
This, like so many diseases is not a disease that only affects the individual;
it affects the entire family and the family’s well being. We can’t solve a problem until and unless we
are willing to talk about it. And awareness is a good first step, but advocacy
requires action - our action.
Thank you for this opportunity
to share my thoughts with you, Hailey, and for your help and that of your
friends in advancing better care and cure. As a founding member of
WomenAgainstAlzheimer’s, I must end with our hashtags and motto: #STOPAlz
#WeWontWait and my personal manta: #StampOUTAlzheimers