Nick Callahan knows what it takes to orchestrate optimal support for someone living with essential thrombocythemia (ET). He’s been a best friend and committed caregiver for his significant other and professional violinist, Toula Bonié, since they met in 1991. Nick sees his role largely as a facilitator. Day in and day out, he does whatever is needed to help Toula overcome the challenges of ET—grocery shopping, cooking, running errands, and walking their dog. All while working full-time.

Nick’s specialty is what they lightheartedly call “princess service.” That’s when he drives Toula directly to the back stage door for her concerts with The Florida Orchestra. “Sometimes the little things are the big things that really make a difference. It’s about making everybody’s life better and easier.” Toula is beyond grateful for Nick’s selfless patience and kindness. She is keenly aware that his devoted caregiving has a huge impact on her life and her ability to enjoy it. Together, Nick and Toula define what it is to have a steadfast, strong relationship built on mutual admiration, respect, and making the most of life with ET.

Michele A. Couri is a dedicated hiker who enjoys the tranquility of nature as a way to unwind and get some exercise. She’s also a full-time practicing OB/GYN who is living with myelofibrosis (MF). She was originally diagnosed with polycythemia vera (PV), but her condition transformed to MF. Michele’s interest in becoming an MPN patient advocate was awakened when she befriended the late Bob Rosen, founder of the MPN Research Foundation. To honor Bob’s legacy, Michele created a not-for-profit organization called MPN Peoria. Their goal is to lead fundraising efforts to support research and raise awareness of MPNs.

MPN Peoria gave Michele the opportunity to combine her love of hiking with fundraising for MPNs. In two years, Michele’s organization has raised $150,000. The 2020 MPN Peoria Hike was virtual, due to COVID-19. Yet it surpassed the previous year’s fundraising amount by about $30,000! In addition, Michele maintains the MPN Peoria Facebook and Instagram pages, working tirelessly to make a difference for patients with MPNs. When she is not advocating for people with MPNs, Michele stays active by biking, kayaking, and spending time outdoors with her husband and six children.

Summer Golden is an MPN Network Manager for the Patient Empowerment Network (PEN). Because she is living with myelofibrosis (MF), she deeply understands how patients and caregivers feel on their journey with myeloproliferative neoplasms (MPNs). Summer infuses her work with compassion—and a well-honed sense of humor developed during her years in the theater. Humor has been Summer’s way of coping with MF. She even performed a comedy routine about her diagnosis. Why? “Everyone deals with this diagnosis differently, so whether it’s through education, support, or in my case, comedy, it’s important to face your disease head on and know you are more than a diagnosis.”

In her role at PEN, Summer has made a positive impact on thousands of patients in the MPN community through e-newsletters, program development, PEN-Powered Activity Guides, and online MPN support groups. Summer works to enhance patient health literacy, enabling shared decision-making and providing educational resources that empower patients and caregivers at every step of their cancer journey. When she is not advocating for the MPN community, Summer and her husband, Jeff, run the North Park Vaudeville & Candy Shoppe—San Diego’s “smallest, sweetest theater” and home to the STARS acting program for people with disabilities.

Rami S. Komrokji is currently the Vice Chair of the Malignant Hematology Department and Lead Clinical Investigator for the MDS Program at the Moffitt Cancer Center in Tampa, Florida. U.S. military veterans with myeloproliferative neoplasms (MPNs) know him in another role: the compassionate MPN expert who goes to extraordinary lengths to help them get access to appropriate care.

While at the University of Cincinnati, Dr. Komrokji reactivated the American VA Hematology/Oncology Association, serving at various times as president and vice president. Because of his service to the VA, Dr. Komrokji demonstrates a true understanding of what the veterans and other patients go through on their MPN journeys. Dr. Komrokji shares his expertise with the broader MPN community as an author and co-author of more than 200 peer-reviewed manuscripts, 20 book chapters, and 300+ abstracts about blood cancers. He also participates in a variety of educational webinars about MPNs with numerous patient advocacy organizations. At Moffitt, Dr. Komrokji’s research interests are in outcomes research in hematologic malignancies with a focus on myeloid neoplasms. “This is one of the largest centers in terms of myeloid research. We see a large number of patients and conduct clinical trials. I run a research meeting every week. There’s a lot of activities here. I really enjoy it.”

Nick Napolitano’s transformation into becoming an outspoken advocate for people with myeloproliferative neoplasms (MPNs) was a gradual development. It began in 2016 when a routine physical revealed he had polycythemia vera (PV). Initially, he was not comfortable talking about his symptoms or the disease. Then he and his wife had a conversation that would change his outlook. Nick decided to take action. He started eating healthier, working out more consistently, and connecting with others in the MPN community. “I have it, and I’m going to do some good with it.”

He has since dedicated himself to educating others and raising awareness of MPNs. Nick has shared his story through a documentary titled “The Unknown: Nick’s MPN Story.” In it, he discusses his determination to help others meet the challenges of living with an MPN. Nick also partnered with Patient Power to create and share coronavirus coping strategies for patients with MPNs. He has appeared in numerous webinars and virtual meetings, often discussing topical issues with pioneers in the MPN field. He has spoken at MPN conferences and has been a featured participant at his local Leukemia & Lymphoma Society’s Light the Night event. He credits his dad for having a positive influence on his journey with PV. Nick knows how important it is for patients with an MPN to be able to connect with others who have a similar experience. That’s why he plans to continue his MPN patient advocacy efforts for years to come.

Carmen Orrico has a profound desire to help raise awareness about essential thrombocythemia (ET) among other young people with the disease. She was diagnosed with the rare condition at age 17, which is unusual because ET is most common in adults over 50. When she researched the disease, she didn’t find information that could help her connect with other young patients. “I felt a little bit alone. I didn’t know a lot of people my age getting diagnosed. I felt there wasn’t a place for me to go and connect with other people.”

Seeing an unmet need, Carmen created an Instagram page about ET. Her objective is to bring greater awareness to the condition and share resources that may help others overcome obstacles presented by ET. She and other young adults all over the world now share stories and compare notes about managing ET. Today, Carmen is in college. She also opened a small makeup studio called Blended by Carmen. She uses her artistic talents to return goodwill to her hometown community that supported her in her journey. Carmen is a 2020 MPN Hero because she became a spokesperson for her generation, establishing an ongoing social media dialogue offering connection, familiarity, and friendship.

David Snyder is Associate Director in the Department of Hematology & Hematopoietic Cell Transplantation at the City of Hope Comprehensive Cancer Center in Duarte, California. Dr. Snyder is nationally acclaimed in the field of myeloproliferative neoplasms (MPNs) as an expert in stem cell transplantation for managing MPNs, chronic myeloid leukemia (CML), and other blood disorders.

Dr. Snyder is a caring physician with a hectic schedule seeing patients, writing scientific papers, and collaborating with colleagues. During his 43+ years of medical practice, he has advanced the science of MPNs through his research and clinical trials. He is frequently asked to speak at national medical seminars to share his encyclopedic knowledge of MPNs. He also emphasizes education as a cornerstone of patient empowerment for the MPN community. Whether through patient advocacy forums or talking one-on-one with patients, Dr. Snyder has helped people with MPNs live with hope, strength, and courage. MPN patients and Healthcare Professionals alike are grateful for Dr. Snyder’s leadership and wish him well as he plans to retire, capping a distinguished career researching ways to improve care for people with MPNs.

Samuel Verniero, Jr., has had a life of distinction in service to others as a United Nations diplomat, honorary Kentucky Colonel, and leader in the state of Georgia for people with disabilities. He speaks with authority for people with disabilities because he knows what it’s like. Sam is living with polycythemia vera (PV) compounded by multiple serious medical conditions. He uses his public platform and contacts on various boards and commissions to “push really hard” to raise awareness of myeloproliferative neoplasms (MPNs). He and his fiancé, Lanora, were approached by two motion picture companies that want to tell his story. Sam is excited that these opportunities can make a greater impact for the MPN community by reaching a nationwide and maybe even global audience.

Sam is a testament to the indomitable courage needed when trying to change the hearts and minds of people unfamiliar with MPNs. Several strokes have disabled his body but not his effusive personality or spirit. He continues to work for change and voice the need for additional MPN research that could improve the lives of patients with MPNs.