If you’re touring with Elizabeth Santos of
Ukiah, odds are excessive that she’s going to ask you to take an image of her holding her
purple #ENDALZ signal. This Alzheimer’s Affiliation volunteer carries her signal—and her ardour for advocacy—in every single place
assist for others
Elizabeth has owned three small long-term care
amenities in Mendocino County for over 20
years. When she entered this area, she didn’t
know that her work
would grow to be her lifelong ardour.
By means of her work, Elizabeth has
encountered many households who didn’t know care for his or her family members
residing with Alzheimer’s or different dementias. Typically the households had been
not capable of afford skilled care.
When Elizabeth started to seek for
assets to assist these households, she found
how difficult it was to seek out
assist in a rural city like Ukiah. It has grow to be her mission to assist households overcome these challenges.
Initially, Elizabeth joined native
coalitions and reached out to organizations like hospice, the Division of
Public Well being, and even the Nationwide Institutes of Well being. She additionally
related with the Alzheimer’s Affiliation workplace in Sonoma County.
As she discovered extra in regards to the providers
the Alzheimer’s Affiliation needed to provide, such because the 24/7 helpline, Elizabeth
shared this data with members of her group. She enrolled in
persevering with schooling lessons, began networking with others and have become an
The Alzheimer’s Affiliation has grow to be
Elizabeth’s go-to useful resource. “They’re my
different household,” she shared. “They’ve guided me and skilled me so nicely.”
I stepping into?
got here to the U.S. from the Philippines in 1986 with a background
in medical know-how. She hated
finding out politics when she was in class.
About three years in the past, Shelley Dombroski,
Regional Director of the North Bay places of work, invited Elizabeth to attend
California Advocacy Day in Sacramento. Even
although she had by no means been excited by politics, Elizabeth stated sure.
Day Elizabeth met individuals from throughout California whose lives
had been impacted by Alzheimer’s. Whereas
Elizabeth’s grandmother had died from Alzheimer’s within the Philippines, she didn’t
have any family members with Alzheimer’s within the U.S.
first, Elizabeth wasn’t certain what she may contribute. Then she
realized that by taking part, she was representing all from Mendocino County who’re residing with Alzheimer’s or are caregivers.
A few of the most vital elements
of Alzheimer’s care are early detection and correct analysis. Elizabeth
shared how this one of many greatest challenges in rural communities, the place
specialists reminiscent of neurologists are missing.
In reflecting on her
Advocacy Day expertise, Elizabeth stated, “it simply touched my
A part of
After Advocacy Day, Elizabeth joined the
volunteer advocacy staff for Congressman Jared Huffman. In her new position,
Elizabeth has sought assist from her
staff members, mates, and Alzheimer’s Affiliation workers to
be taught extra about authorities and advocacy.
Elizabeth’s new experiences as an
advocacy volunteer embody attending city corridor conferences and talking together with her
state and federal legislators. She discovered use Twitter as a part of
her volunteer advocate position, serving to her talk with legislators, different
volunteers and different group members.
What it means to be an advocate
how a lot she appreciates the assist she receives from Alzheimer’s
Affiliation. The chapter and state coverage
workers reply her questions and supply
coaching, knowledge and pattern communication assets. “I really feel like I’ve a number of
mothers who’re searching for me,” shared Elizabeth. “It’s wonderful!”
to Washington, D.C.
Based mostly on her optimistic expertise in Sacramento
that the subsequent yr, Elizabeth registered
for the Advocacy Discussion board in Washington, D.C. After receiving coaching
and planning their visits, groups of advocates took buses to Capitol Hill. “As I rode the bus to the Capitol,” stated
Elizabeth, “it actually hit me that I used to be doing one thing that would assist so much
Elizabeth and her fellow staff members met with legislators and
their workers. They inspired
legislators to assist elevated federal Alzheimer’s analysis funding, alongside
with payments associated to palliative care coaching and a public well being method to
Elizabeth was thrilled when the BOLD
Alzheimer’s Act was signed into legislation in December. She felt joyful, proud and grateful to have been part of that
When the BOLD Act handed, she despatched thanks
notes to her legislators and different key champions in Congress, utilizing Alzheimer’s stamps. She
shared that implementation of the legislation can be an amazing reward for tens of millions of households.
by others’ tales
Elizabeth is impressed by the opposite volunteers,
particularly youthful girls on her staff who’ve been caring for fogeys with
Alzheimer’s, in addition to advocates who’re residing with
the illness. When she is having a tough day, she
thinks of those people.
There are occasions, after having met
with a household who’s dealing with a troublesome state of affairs, that Elizabeth appears like giving up. “I’ll come dwelling and inform
my husband I’ve had sufficient of dementia,” she admits. “However
then I’ll attend an advocacy retreat, meet with my staff or learn a form Tweet and I’m re-energized.”
the #ENDALZ message worldwide
When Elizabeth went to the Advocacy Discussion board, she
acquired a purple #ENDALZ signal. In a lot of her photographs from conferences with
legislators, she asks them to carry the signal. “I all the time have the sign up my
automotive,” Elizabeth stated.
Final fall, Elizabeth and her husband, Jay, went on a backpacking journey in Italy. Whereas excited
in regards to the journey, she was unhappy to be lacking the Petaluma Stroll to Finish
Alzheimer’s for the primary time in over 10 years. Elizabeth packed the #ENDALZ sign up
her baggage and took photographs with it all through her trip.
Elizabeth feels that it’s vital for individuals
from various backgrounds and communities to become involved with advocacy. “Alzheimer’s illness is a worldwide disaster,” stated Elizabeth. “It’s not an issue for only one nation or
racial/ethnic group. Everyone seems to be affected.”
Elizabeth’s ardour for advocacy is infectious.
A number of years in the past, she related via social media with a caregiver in Chico
whose husband had Alzheimer’s. Elizabeth inspired her to succeed in out to the
Alzheimer’s Affiliation in Chico and shared different assets over time.
The caregiver typically noticed Elizabeth’s posts about
being an advocate and thanked her for her efforts. The lady’s husband handed away few years in the past.
In January, Elizabeth acquired a message that
the caregiver was attending Advocacy
Day in Sacramento. She shared that Elizabeth had impressed her to grow to be
concerned. After 5 years of speaking on
social media, they lastly met in particular person.
Elizabeth shares what it’s worthwhile to grow to be an advocate
Elizabeth’s ardour for advocacy has impressed her circle of relatives as nicely. Despite the fact that she
couldn’t attend the Petaluma Stroll to Finish Alzheimer’s final yr, she was proud
that her three daughters and their households all participated. Her grandson
Sammy, not even one yr previous on the time, was there as a younger advocate.
hopes for the long run
Elizabeth aspires to be the voice
for individuals who can’t communicate for themselves. She has discovered her true ardour via
“We will’t change the top of the journey but,”
acknowledged Elizabeth. “I hope that sometime there will probably be a remedy. Till then,
I hope my advocacy will result in extra applications in our communities to ease the
journey for individuals who are dealing with Alzheimer’s.”
Elizabeth embraces the Alzheimer’s
Affiliation imaginative and prescient of a world with out Alzheimer’s illness. She stays
optimistic, stating that, “Someday I’ll take an image with out my #ENDALZ
Elizabeth, on her expertise on the Advocacy Discussion board