MY LIFE Matters - Advocacy in Action - 34

A SPOTLIGHT ON HEAL Advocating for Health Equity
ILLINOIS
LATIA MAXWELL, TLF ANGEL ADVOCATE
Since joining ANGEL Advocacy, one standout highlight was my participation in the Black Women's
Expo in Chicago. Engaging with fellow ANGELS and discussing Tigerlily's mission with Expo
attendees was incredibly exciting and fulfilling. Additionally, I had the privilege of attending the We
Shall Overcome Panel event. This experience provided invaluable insights from medical professionals,
community activists, survivors, and Thrivers.
Through Tigerlily, I found a network of amazing women who share my experiences and can truly
understand and empathize with my journey. The training I underwent was incredibly enlightening and
I gained a wealth of knowledge. It's eye-opening how much goes unspoken when it comes to understanding
breast cancer. The ANGEL community has given me not only a platform but a sisterhood, and
an opportunity to shed light on these crucial conversations.
I'm planning a Breast Cancer Afternoon Tea that aims to raise awareness and celebrate survivors
and Thrivers. This event will serve as a platform to emphasize the importance of early detection and
support those who have bravely faced this challenge.
Advocacy in policy is important to uphold accountability within the field. It ensures that education,
care, and compassion remain central to the cause. As an advocate, my driving force stems from personal
experience. Joining Hill Day and supporting the TNBC Research & Education Act holds profound
meaning for me. Prior to my diagnosis, triple-negative breast cancer (TNBC) was an unfamiliar term. I
was diagnosed with TNBC despite lacking family history or genetic markers. The alarming impact on
Black and Hispanic women's survival rates has spurred me to action. Having been granted a second
chance at life, I feel a moral responsibility to speak about my journey, champion the needs of others,
and use my voice to push accountability through enforceable policy.
LOUISIANA
" Advocacy in policy
is important because
changemakers
hold the power. Yet
changemakers may
not always go through
the experience. "
- Jonell Deshotel
34
MY LIFE MATTERS
ADVOCACY IN ACTION | FALL 2023
JONELL DESHOTEL, TLF ANGEL LEAD
Since joining the ANGEL advocacy community, my personal highlights include attending the San
Antonio Breast Cancer Symposium, being the keynote speaker for the Ochsner Medical Center
survivor event (in New Orleans), and most recently being a part of the Unstoppable Tour stop in
New Orleans during Essence Music Festival.
After being diagnosed with breast cancer, I made a personal decision to not go public with
my diagnosis until after I completed active treatment. I had 16 rounds of chemotherapy and
was not " ready " to talk about it yet. My village rallied around me and shielded me from the
world for six months. During this time, I would quietly follow amazing survivors and fellow
warriors. I would admire their bravery and knew eventually I would choose to go public with
my journey. All my social media profiles went public on the day I rang my chemotherapy bell.
Now that I look back on it, I think I may have " broke the internet " that day. I joined the ANGEL
community about two months after that. The Tigerlily Foundation had sought me out shortly
after I had my double mastectomy. Immediately, I knew that this was an organization that I
needed to be a part of. I had done research on Maimah, the founder, and I was so inspired by
her story and endless efforts to do what was needed for women of color. Since becoming an
ANGEL, I feel more empowered, educated, confident, and inspired. Telling my personal story
is only one piece of the puzzle, as well as having the ability to be patient advocates along
with some of the most powerful women I have ever met. Being heard. Being seen. I have
become more health literate in every capacity. I am constantly learning, along with constantly
teaching. I feel more confident in being a safe space for women who struggle in their own
journey. My nurse navigator even shares my contact information with women recently diagnosed
so they can have someone to talk to and lean on. The opportunities are endless, and
the experience is so rewarding.
Advocacy in policy is important because changemakers hold the power. Yet changemakers
may not always go through the experience. Breast cancer is a very broad subject. I personally
became informed of the disease because of my mom and her 14-year battle with it. My mom
was originally diagnosed when I was 13 years old. I was diagnosed at the age of 34. This means
I technically had 21 FULL years of breast cancer knowledge prior to my own diagnosis. I knew
about breast density, self-exams, genetic testing, etc. I was fortunate in that aspect. Those
experiences and testimonies are important for our changemakers and policymakers to hear and
understand. Unless you have been affected yourself or by a close family member or friend, you
will never know just how critical this advocacy work is.

MY LIFE Matters - Advocacy in Action

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