In 2020, more than 1.8 million individuals were diagnosed with cancer in the United States alone according to the National Cancer Institute. With every new diagnosis, a new cancer survivor emerges — someone who is living with, through, or beyond their disease.
National Cancer Survivors Month, held each year during the month of June, encourages us all to celebrate those whose lives have been impacted by cancer. Yet beyond a single month, it’s important to take time all year long to honor every milestone in a cancer patient’s journey and remind them and their families that they are not alone — and there are patient leaders out there who are doing exactly that and more.
These cancer survivors and advocates are using their stories to not only empower their patient communities on a day-to-day basis, but to fight for a collective battle that isn’t over yet. They’re raising awareness for early detection and treatment, fundraising for research, providing avenues for connection and support, volunteering with nonprofit organizations, collaborating with healthcare, and the list goes on.
Whether you have a personal connection to cancer or not, we encourage you to show your support for the cancer patient leaders who are selflessly supporting others. Take time to read their stories, act on their causes, and rally behind the work they’re going to ignite hope and change for all.
Meet 9 cancer patient leaders whose survivorship has fueled their efforts to better the patient and caregiver experience for others:
Joe Bullock, Colorectal Cancer Patient Leader
After a routine colonoscopy in 2018 revealed stage 3b colon cancer, Joe was left feeling isolated and depressed while he endured life-altering surgeries and months of chemotherapy. He credits support from his family and a therapist for helping him get through one of the most difficult times in his life. Now, he uses his voice and story to end the stigma, raise awareness, and support others.
Joe urges all men to not ignore symptoms and to talk about what they’re going through, working closely with the Man Up to Cancer organization founded by fellow colorectal cancer patient Trevor Maxwell. Most importantly, Joe says, “I will not stop advocating for men with cancer. I believe that if cancer is done with me, I am not done with cancer.” Follow Joe’s journey on social media.
Tori Nefflen, Myelofibrosis Patient Leader
Tori began her journey with bone marrow cancer at the age of 22. She began chronicling her day-to-day life with myelofibrosis on social media and via her Caring Bridge website — from chemotherapy to her recent stem cell transplant.
She’s driven to leave this world a better place than she found it, speaking out on behalf of the cancer community as well as those living with disability or chronic illness. She says, “I cannot continue to live in a society where the conditions and lived experiences of the medically disabled and chronically ill continue to go unnoticed, uncared for, and unheard.”
She’s continually sharing ways for her followers and community to take action — from donating blood or funds to cancer patients in need, to signing up for the bone marrow registry. And she’s rallying everyone to learn more about how they can end ableism and misconceptions surrounding those who are medically disabled. Find out how you can support Tori’s mission.
Aisha Patterson, Breast Cancer Patient Leader
Aisha took to advocating for breast cancer only a few months after her stage II diagnosis in November 2020. After a friend told her to “put cancer where it belongs, under her feet,” she empowered herself by writing the word “cancer” on the bottom of her shoes – and soon began encouraging others to do the same.
In honor of World Cancer Day 2021, Aisha initiated the “Walk on Cancer” movement. She asked survivors and warriors to write “cancer” on the bottom of their shoes and share photos on social media using the #WalkingOnCancer21 hashtag in the hopes of raising awareness for early detection, prevention, and treatment.
You can find Aisha on Instagram and TikTok speaking candidly about topics ranging from balancing treatment with motherhood to protecting mental health after a diagnosis, collaborating with other cancer advocates and thought leaders, as well as speaking at awareness and educational events. Keep reading about Aisha’s impact here.
Stephen Pecevich, Childhood & Brain Cancer Patient Leader
2005 was the year Stephen’s life changed forever as he stood by his 1-month-old daughter while she battled brain cancer — from 48 surgical procedures to chemotherapy, shunt revisions and more.
On a night when she nearly lost her life, he vowed to be his daughter’s legs, and did just that. Stephen has now run over 18 marathons to raise awareness in honor of his daughter.
As a childhood cancer “DADvocate,” speaker, author, and songwriter, Stephen has passed along the difficult lessons his daughter’s journey taught him. He says, “I believe bringing empathy to light, despite my devastating first-hand experience(s) linked to our overwhelming childhood cancer hardships is now an incumbent responsibility of mine, even in the face of being challenged by God’s Great Plan. This is precisely why I strive to lead by example so that individuals without hope can better grasp that their lives do not have to be picture perfect in order to be experienced as a most magnificent journey.” Support Stephen and his daughter by following them on social.
Brittney Tellekamp, Bladder Cancer Patient Leader
In July 2019, Brittney drove herself to the emergency room in severe pain. It was then that doctor’s discovered stage IV metastatic bladder cancer. Her atypical experience of being “a young woman with an old man’s disease” is what inspired her to take to the internet and talk about what she was going through. She launched the “No Bladder Don’t Matter” Facebook page and website — a safe space for her and other bladder cancer patients to speak candidly about every aspect of their diagnoses and get tangible resources to aid them in their journeys.
Her work as an advocate has grown alongside her following, motivated by her mission to put a face to the chronic cancer community. Over the last 2 years, she’s been invited to write for bladdercancer.net, spoken at the North Carolina Bladder Cancer Retreat, sits on a patient advisory panel for the World Bladder Cancer Patient Coalition and on the advisory board for the Global Patient Advisory Board on Metastatic Bladder Cancer. Learn more about Brittney’s advocacy efforts here.
Alfred Samuels, Prostate Cancer Patient Leader
As an advocate, Alfred strives to be a voice for the voiceless – one that echoes hope, motivation, and inspiration in the fight against prostate cancer. Because of his own diagnosis of advanced prostate cancer in 2012 – a disease that disproportionately affects Black men – he has a deep understanding of the need for early detection, better resources, more support, and cancer research funding.
Alfred is using his story of survivorship to motivate and educate others. He has not only authored two books including “Invincibility in the Face of Prostate Cancer: Coming out the Other Side, and Motivated to Inspire,” but has dedicated himself to patient involvement. He is a cancer campaigns ambassador and a member of both the Cancer Research UK’s Involvement Network as well as the Research & Strategy Cancer Insights Panel and Corporate Focus Strategy Group.
His extraordinary achievements were recognized in 2019 at the Cancer Research UK Flame of Hope awards where he was honored as “Ambassador of the Year.” Take a moment to connect with Alfred.
Parul Somani, Breast Cancer Patient Leader
After being diagnosed with stage II triple negative breast cancer and learning she was BRCA1+, Parul realized her mission and the legacy she wanted to leave behind. She pivoted from her corporate career to serve as an inspirational speaker championing causes like patient empowerment, the power of genomics, healthcare transparency and access, and resilience and mental well-being. She says, “Everyone should benefit from the power of actionable genetic information and learn how to advocate for themselves and their family when it comes to navigating their health and healthcare.”
As an advocate, Parul reaches thousands of people via her blog, “New Job. New Baby. New Cancer.” Her work extends to Stanford Health Care films and webinars on survivorship and mindset, speaking engagements for a multitude of worldwide organizations, and resilience training for global employers.
In 2020, Parul’s dedication to her community and her commitment to bettering the patient experience was recognized by being named the “Raising Hope Honoree” by the American Cancer Society. Be sure to add this inspirational patient leader to your feeds.
Richard Farmer, Multiple Myeloma Patient Leader
At 63 years old, university professor and psychologist Richard began his journey with multiple myeloma – a rare form of blood cancer. Shortly thereafter, his wife was diagnosed with breast cancer. While his own diagnosis was life-altering, he notes that his wife’s diagnosis challenged him to question his role as provider, protector, and husband.
Closer to age 70, he says, “As time progressed and I searched for some meaning to understanding cancer, I began to focus on the concept of hope.” Richard has now made it his mission to be a source of comfort and understanding to all, regardless of cancer type.
As an advocate, Richard has led multiple myeloma support groups in conjunction with nonprofit organizations and is now in the process of developing his own support group following the publication of his book, “The Reluctant Journey: Lessons Learned by Five Cancer Travelers.” Most importantly, he’s leveraging his and his wife’s story to help others cope as they navigate their own journey with cancer. Stay updated on Richard’s advocacy journey.
Leya Elijah, Chronic Lymphocytic Leukemia Patient Leader
Leya has been living her life as a Fabulous Fighter, surviving Chronic Lymphocytic Leukemia courageously for the last six years. As someone who has a passion to inspire and love others, she’s made it her mission to encourage her community and never passes up an opportunity to remind them that they are enough – no matter what.
Leya is a contributing writer for bloodcancer.net, where she publishes uplifting yet honest articles about her journey and what she’s learned along the way. She uses her social media, branded “This Is What a Fighter Looks Like,” to raise awareness and empower others on their own cancer journeys. Because as she says, “Despite all we endure as survivors; this is what a fighter looks like!” Learn more about the community Leya has cultivated here.
Are you or someone you know a cancer survivor who’s looking to use their experiences to better the patient journey for others? Get paid to transform healthcare simply by sharing your story and insights when you join the WEGO Health Patient Leader Network. Sign up here.