At the age of 38, Desirée was diagnosed with breast cancer, which recurred at age 47. Desirée’s diagnosis has created many opportunities as a breast cancer survivor to share her talents and to aid diverse communities. It has provided her with a platform to be a voice for the voiceless through advocacy and to pay it forward by educating and empowering people. Most importantly, she makes time to “smell the roses” and enjoys spending time with family and friends, baking gourmet bread pudding, traveling, attending concerts, cultural programs, and sporting events.
Desirée serves as an advocate for patients by openly speaking about her diagnosis to audiences across the country. The core of her message is to encourage patients to truly know their bodies and to feel empowered to steward mind, body, and soul. She serves on NCCS’ CPAT Steering Committee, where she helps guide our advocacy agenda and educational programs. She has also served as a committee member on two NCCS projects.
Desirée, through SHARE’s Side by Side Program, also trains medical students and doctors on how to deliver disappointing news and passionately supports the importance of patient-doctor communication. In addition, she volunteers with the Witness Project® of Harlem, Survivors in Spirit (SiS), and, as a board member, Young Survival Coalition (YSC). Desirée is also a member of the Tisch Cancer Institute Advocacy Group, the Center for Disease Control and Prevention’s Advisory Committee on Breast Cancer in Young Women, and the National Breast Cancer Coalition (NBCC) (which she is also a graduate of its Project LEAD).
As a patient advocate, she’s attended many scientific meetings, such as the American Association for Cancer Research’s Scientist-Survivor Program and the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved. Desirée is a consumer reviewer for the Department of Defense’s Congressionally Directed Medical Research Program and a patient/stakeholder reviewer for Patient-Centered Outcomes Research Institute.
Erin has been a cancer survivor for over 47 years. Diagnosed with Hodgkin Lymphoma at age 15, Erin “beat the odds” and went on to pursue a college career as a pre-med student, obtain a Master’s degree in Social Work, marry and raise a family of four children – all after being told that she would probably die as a young adult. She is the co-founder and Executive Director of “Hodgkin’s International” – a non-profit organization that supports long-term Hodgkin’s survivors all over the world.
Her personal and professional priority is to empower her fellow Hodgkin’s survivors through connection, education, and advocacy. Erin exemplifies the concept of “thriving, not just surviving.” She is known for pouring her heart and soul into every day.
Though battling numerous late effects of her earlier treatment, including heart and lung disease, Erin has (to date) completed 7 marathons and many smaller races. Five of those marathons were in New York City, where she ran with “Fred’s Team” at Memorial Sloan-Kettering Cancer Center to raise funds for Pediatric Cancer research. In those five marathons Erin raised over $100K for the hospital.
Erin is also a writer with the “Visible Ink” program at Sloan-Kettering. She has had everal of her stories appear in their written anthologies, including two that were chosen for staged readings. In addition, Erin is a 2019 Elevate Ambassador alumnus and recently participated in an NCCS webinar on coping with stress and anxiety during COVID-19.
When it comes to all-star advocacy, Loretta Herring wrote the book. She is a CPAT member and a 2019 Elevate Ambassador alumnus. Her work focuses on community workshops to empower and honor cancer survivors. The program offers them a platform to tell their story, encourage caregivers of cancer patients and remember those who did not survive cancer.
Loretta also founded the Cancer Awareness Network for Children, Inc., a non-profit that was born out of the pain of her mother’s untimely death due to cancer.
For the past 22 years, Loretta has served as co-founder, CEO and program coordinator for the organization, which hosts four free workshop/luncheons that touch over 250 lives annually at local churches and community centers throughout the Birmingham Metropolitan Area.
This program offers assistance with transportation to treatment, house cleaning for those in treatment, one-on-one spiritual support upon request, and much more.
Doris received a life-changing diagnosis of inflammatory breast cancer in 2007. She became very involved with shaping the concept of survivorship care at the center where she received treatment and co-founded its mentorship program. She also created community events to educate, encourage, and empower people with cancer.
When she moved from the East Coast to rural South Dakota, she asked the local cancer care center what resources they had for survivorship care and they said, “Relay for Life.” She then took everything she learned about quality cancer care to become her local center’s first-ever Survivorship Community Outreach Liaison.
She is a 2019 Elevate Ambassador alumnus and was also invited to serve on the highly-esteemed steering committee for the South Dakota Comprehensive Cancer Coalition.
Aside from being a powerful advocate, public speaker (check out her TEDx talk, “Cancer Survivorship: Finding a New Normal”), blogger, educator and encourager on issues facing cancer survivors, Doris is a wife, mother, empty-nester, survivor of life, and coffee lover. She co-manages a local health food store—where she hosts survivorship workshops, of course.
Randall “Randy” Broad was diagnosed with Stage III non-small cell lung cancer NSCLC) in 2008. Following his “deemed inoperable” surgery, the surgeon prognosed a shortened future and said, “You best get your things in order.” With this directive, Randy set about “re-ordering” his life by re-prioritizing his values.
With a shortened warranty given on the front end, the cancer journey led Randy to chronicle key learnings. The original goal, to provide his kids a reference to some of life’s more cherished and meaningful experiences, became an Amazon bestseller, It’s an Extraordinary Life – Don’t Miss It.
The book has since opened the door to the world of professional speaking and full-time health care advocacy. Randy’s takeaway from this experience was to realize how much people engage by listening to stories—real life stories that touch on the fabric of life.
Xenia doesn’t hold back when she refers to her cancer as a traumatic experience. She was diagnosed with endometrial cancer at 31 and underwent treatment for a year, which included high doses of steroids. After almost two years of remission, Xenia’s cancer returned and had begun to spread to her uterus. With her oncologist’s recommendation, Xenia underwent a radical hysterctemy at age 34.
“No google searches or consultations with an oncologist or nurse practitioner can prepare a young woman for what her body will experience during the months that follow,” says Xenia.
Xenia felt out of control. She did not know how to would react emotionally and felt like a stranger in her own skin. Nothing made sense to her and life did not return to normal – everything fell apart and she hit rock bottom.
Two years after Xenia’s surgery she found a running group that connected other cancer warriors called, “Cancer to 5k.” Not only did Xenia take part in the training, she also participated in a program where survivors could walk/run/commute from Baltimore, MD to Key West, FL and visit various cancer centers along the way. During the journey, Xenia met lifelong friends. They were supportive of Xenia, cried when she cried, and laughed at all the idiosyncrasies that can occur during cancer treatment. Most importantly, they understood her.
When Xenia completed her goal race, friends began asking her when the next one would be. Thus, one 5K turned into a 15K. Then came the ultimate “Why not?”—the chance to run the NYC Marathon. She accepted the challenge and accomplished the marathon.
“No one knows how everything will turn out. All I can control is my training schedule and frame of mind. I conquered cancer—what’s 26.3 miles?” – Xenia
Xenia believes in finding an activity that makes survivors rediscover the parts of their bodies that cancer silenced. Xenia is her district’s legislative representative for the American Cancer Society Cancer Action Network and is an active volunteer with the Ulman Foundation based in Baltimore.Xenia is also an NCCS Elevate Ambassador.
In addition to advocacy, Xenia is a practicing art therapist in New York City and co-hosts a mental health-focused podcast, “Firefly and Phoenix.” She finished her first marathon—the New York City Marathon—in November, and is training for her second, while also managing her dog’s Instagram account @rupert_to_the_rescue.
Wenora Johnson is a three-time cancer survivor and Lynch Syndrome patient. She is an enthusiastic advocate who works with many organizations to promote policy and research around cancer.
Wenora served as a consumer reviewer, nominated by NCCS, in the Congressionally Directed Medical Research Programs’ (CDMRP), Peer Reviewed Cancer Research Program (PRCRP). As a consumer reviewer, she was a full voting member (along with prominent scientists) at meetings to help determine how the $90 million appropriated by Congress for Fiscal Year 2019 will be spent on cancer research.
“As a Cancer Survivor and Patient Advocate, it was one of the most rewarding experiences I’ve participated in, especially knowing my participation will have a positive effect on the future and advancement of cancer research.” – Wenora Consumer reviewers, like Wenora, represent the collective view of patients by preparing comments on the impact of the research on issues such as diagnosis, treatment, and quality of life.
She is a PCORI (Patient-Centered Outcomes Research Institute) Ambassador and Peer Reviewer, and she was recently selected as a member of the National Quality Forum’s Cancer Standing Committee.
The first time Hillary’s best friend Katie heard “you have cancer,” she was sitting in the doctor’s office with her. They were both 28 years old. Hillary collapsed, weeping in anticipation of what they were about to embark on.
Hillary studied breast cancer extensively while she earned her PhD and served as a postdoctoral fellow. As a research scientist, she thought her years of education and focus on breast cancer would prepare her for Katie’s diagnosis. Instead, she felt completely lost.
Hillary was amazed at how little she had learned about how cancer affects the person as a whole during her years of training. She could tell you how Katie’s HER2 protein makes cells grow and divide, but she didn’t know the side effects of the therapies that blocked this process or the normal course of treatment.
“I noticed that working with advocates was transforming my research, and ultimately my career, as I began to factor in the human aspect of cancer into my research. More importantly, I realized that I was one of a few research scientists engaging in this kind of patient-based work.” –
Over time, Katie’s treatments came to an end, but Hillary continued working with patient advocates online and in person. More importantly, she realized that she was one of a few research scientists engaging in this kind of patient-based work. This led Hillary to explore more ways to improve relationships between patient advocates and researchers.
“My hope is that many more research scientists, and not just those who hear the words ‘you have cancer’ will engage with cancer advocates early and often, recognize the value of these relationships, and incorporate that knowledge into their research.” – Hillary Stires, PhD
Not everyone confronts cancer as closely as Hillary’s best friend, but she is grateful for the catalyst it was in her life and work to help facilitate more relationships between patient advocates and research scientists to improve cancer research.
Hillary is a 2019 NCCS Elevate Ambassador alumnus and presented a TEDx talk on the value of science communication.
Richard and Lynne
Richard and Lynne
Richard wasn’t expecting to meet someone as special as Lynne in his hospice bereavement group. His wife of 36 years passed away, and little did he know, so had Lynne’s husband of 36 years. Richard and Lynne share other things in common, such as cancer survivorship, their love for traveling, and their love for one another. Richard is a cancer survivor and widower who is especially fortunate to have Lynne alongside his cancer journey. Together, Richard and Lynne attend health appointments, give each other emotional support, advocate for quality cancer care on Capitol Hill, and face life’s challenges and joys with love and loyalty.
“I love his ability to share his past openly and honestly, making me feel a part of it. His devotion to advocacy for cancer survivorship is encouraging and motivating for me. He is ethical, genuine, and loyal. Most importantly, I love that Richard is my friend, my companion, my supporter, my pal. He has given me the opportunity to love again, love life again, and be grateful for the future while still remembering the past.”
– Lynne, Caregiver, NCCS Advocate
“Lynne is my companion and soulmate. She has my best interests at heart and I can depend on her to always be there for me! She is my compass — there to remind me that it is always the right time to do the right thing and to strive to be the best person that I can be. What I love most about Lynne is our indescribable bond.”
– Richard, Cancer Survivor, NCCS Advocate
Virgie and Martin
Virgie and Martin
Virgie discovered her son’s cancer had recurred and had a 10% survival rate, over the phone. A modest and graceful woman, she found this life-altering, informal exchange to be one of the hardest moments of her son’s cancer journey. Although her son Martin, and the rest of the world, would never know anything bothered Virgie, including his cancer journey, she gave her son relentless faith, encouragement, hope, and fuel that he wore firmly during treatments. These traits were especially needed when they discovered Martin had a recurrence, following his initial remission.
Just like mother and son, Martin’s cancer was relentless. It exhausted Virgie to think about the time, energy, and worry this diagnosis required. It’s one of the reasons Martin and Virgie flew to a gaming conference in Las Vegas, by donation, prior to the beginning of his treatments. Cancer may demand a lot – but joy and memories aren’t always it.
Intelligent and optimistic, Martin shared his experience at NCCS’ annual CPAT symposium while Virgie smiled with pride. The entire room of cancer survivors and advocates felt his joy, optimism, and strength. Virgie and Martin planted seeds of inspiration by making a crowd with heavy burdens feel lighter.
Virgie and Martin believe in the importance of community – which is why they advocate.
Over 15 years ago, Heidi was advised by countless doctors to terminate her pregnancy when she was diagnosed with breast cancer. She would not allow the diagnosis, which took her mother’s life, to also seal the fate of her unborn baby boy. That is why she packed up her family every weekend to stay in another state’s hotel for treatments with a doctor that gave her and her baby the chance to live.
Heidi’s teenage daughter, Catie, remembers those days on the road vividly. The memories of her mom fighting for her life, and her brother’s, shaped who she is now. Bright and courageous, Catie researches the lawmakers who advocate for quality cancer care and refers to her local officials with ownership, saying, “my representative.” She knows who the lawmakers are, what they stand for, and even better — she knows what she stands for.
Catie accompanied Heidi to NCCS’ Cancer Policy and Advocacy Team (CPAT) annual symposium and found her own voice as an advocate. It was no surprise that when she was stopped in the halls of Capitol Hill by countless lawmakers, or when she was randomly chosen from a large crowd to stand on stage next to Speaker Pelosi, she faced it with fearless enthusiasm. Now, a memory and keepsake for Heidi, NCCS, and you.
The future is full of hope, which is Heidi, alongside her family, advocate for a better one.
Want to share your story of advocating for your own care?
The Ellen L. Stovall Award for Innovation in Patient-Centered Cancer Care is a unique opportunity for patients and survivors to recognize pioneers who are transforming the cancer care system.
The NCCS Cancer Policy & Advocacy Team (CPAT) is a program for survivors and caregivers to learn about pressing policy issues that affect quality cancer care in order to be engaged as advocates in public policy around the needs of cancer survivors.
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