CURE®’s 8th Annual MPN Heroes Program Honors ‘Team of Warriors’ Who Have Overcome Challenges in Myeloproliferative Neoplasms

December 5, 2020
Ryan McDonald

CURE, Hematology Special Issue 2021, Volume 1, Issue 1

Conference | <b>MPN Heroes®</b>

Five patient advocates, two oncologists and one caregiver were honored during CURE®’s eighth annual MPN Heroes Program.

A win, or accomplishment, is usually attributed to a team of individuals working toward an end goal. Just as it is in most sports, a team effort is needed to score a victory over a cancer diagnosis, former NFL player Devon Still said during CURE®’s eighth annual MPN Heroes Program on Friday night.

“One thing I understand from sports is that a lot of these victories are a team effort, right? It takes the doctors, it takes the advocates, it takes the researchers, the scientists, it takes the family. Not just the patient, but also the family, because they take on a lot during this battle, and of course, it takes warriors to continue to fight,” said Still during his keynote speech. “We're fighting out there for every family who is battling this disease. So, we have to come together as a team and put forth our best effort to make sure that this community rises over the challenges that we will face.”

In 2015, two months after he almost died from blood clots in his lungs following back surgery, Devon’s daughter, Leah, was diagnosed with a rare pediatric cancer. Devon returned to the gridiron wearing Leah’s message of hope each game. Now, through the Still Strong Foundation, Devon has partnered with socially conscious organizations to raise more than $2 million to bring awareness to cancer and financially assist families whose children have cancer.

Devon spoke to attendees about why it’s important to bring the cancer community together and honor these heroes.

“Going through (cancer), while we're going through a pandemic, is really tough,” he said. “Being able to bring families together and let them know that they're not going through it alone, I think it's very important to help and motivate them to continue to fight. Because a lot of times, when we're going through tough battles in our lives, we feel like we're the only ones who are going through it. But when you're able to talk to other people, other families who are going through those same obstacles you are, you're more inclined to continue to fight.”

During the MPN Heroes Program, eight individuals – five patients advocates, two oncologists and one caregiver – were awarded for their dedication to patients with myeloproliferative neoplasms (MPNs).

Orchestrating Optimal Support

Nick Callahan has been a best friend and committed caregiver to his significant other, Toula Bonié, since they met in 1991. He said he views his role mostly as a facilitator, doing whatever is needed to help Toula overcome the challenges of essential thrombocythemia (ET).

“As time has gone on, more and more things have occurred, from dizziness to muscle spasms to extreme itchiness,” said Toula during the event. “Nick didn't even think about what he would do. He just did it.”

Nick will go grocery shopping, cook, run various errands and drive Toula, who is a violinist, to the backstage door of The Florida Orchestra for her concerts – a perk they lightheartedly refer to as “princess service”.

“Becoming (a) caretaker, it's not a conscious approach,” he said during the event. It's just a transition of helping somebody, basically, to minimize whatever pain or suffering they have and to help them get through especially the episodes when they're suffering or in pain.”

Hiking for MPN Awareness

Michele A. Couri has transformed her love of hiking and the outdoors into an awareness and fundraising program organization. A full-time obstetrician, Michele was originally diagnosed with polycythemia vera (PV), however her condition has since transformed into myelofibrosis (MF).

She first became interested in being a patient advocate for MPN when she befriended Bob Rosen, the founder of the MPN Research Foundation. When Bob died in 2018, Couri created MPN Peoria to honor his legacy. In two years, the organization has raised $150,000 through two hikes in Illinois – one of which had to be virtual because of the COVID-19 pandemic. Couri said she was expecting fundraising for this year’s event to be small because of the pandemic, however it surpassed the inaugural event by $30,000.

“She has a servant's heart, humble, and a warrior spirit,” said Mary Walsh, co-chair of MPN Peoria, during the event. “When she puts her mind to something, she does it. She continues to inspire so many people, not just by telling her story of MPNs, but by who she is.”

Sunshine and Good Humor

Summer Golden has used her sense of humor to impact the lives of thousands of individuals within the MPN community.

An MPN Network Manager for the Patient Empowerment Network (PEN), Summer, who herself lives with MF, has infused her passion of making people laugh into her work. She helps to enhance patient health literacy to enable shared decision-making and provides 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.

“Summer has this unique, positive personality and I think it flows out from her,” Jeff Bushnell said during the event. “Our story, and what Summer is trying to get across, is you only are given one life to live. And you’ve got to play the high end that's dealt to you, (so) make the most of it and not be controlled by this disease.”

Reinvigorating Care for Veterans

Dr. Rami S. Komrokji has authored or co-authored more than 200 peer-reviewed manuscripts, 20 book chapters, and 300 abstracts on blood cancers. However, Komrokji, who is the Vice Chair of the Malignant Hematology Department and Lead Clinical Investigator for the MDS Program at the Moffitt Cancer Center in Tampa, Florida, is known in the MPN community for a different achievement.

While at the University of Cincinnati, he reactivated the American VA Hematology/Oncology Association, serving as president and vice president at various times.

“Honestly, it's very rewarding to take care of those patients,” he said during the event. “I'm still excited and enthusiastic to give much more to the patients, to the research community and to the younger people that we are training.”

Slowly Opening Up About MPNs

When a routine physical in 2016 found that Nick Napolitano had PV, he was hesitant to talk about the disease or its symptoms. But after a conversation with his wife, he decided to start eating healthier, work out more and connect with others in the MPN community.

He then shared his story in “The Unknown”, a documentary where he discusses his determination to help others meet the challenges of living with an MPN. In addition to participating in numerous webinars and virtual meetings, Napolitano recently partnered with Patient Power to create and share COVID-19-coping tips for patients with MPNs.

“We’re a small community, the MPN community, but we’re a strong community and we need each other,” he said during the event. “So, it's extremely important to share your story. I do whatever I can to create awareness to make sure that people understand, so if it helps one person that makes me happy.”

Connecting with Peers

Carmen Orrico was diagnosed with ET at the age of 17, which is uncommon as most cases of the rare condition occur in adults older than 50. When she was first diagnosed, she noticed there was very little information that could help her connect with other young patients.

To bring greater awareness to the condition and share resources that might help others overcome obstacles presented by the condition, Orrico created an Instagram account about ET. As a result of the Instagram account, many young adults around the world share stories and compare notes about managing the condition.

“She’s kind of giving a voice to young people who might get brushed aside, letting people know that life can go on, and that you've got to approach it from a healthy perspective, that despite this challenge that you can still try to have a normal life,” said Carmen’s mother, Natalie Catalano, during the event.

Reflecting on an Extensive Career

Dr. David S. Snyder has helped advance the science of MPNs through research and clinical trials in his more than 40-plus year career.

Snyder, Associate Director in the Department of Hematology & Hematopoietic Cell Transplantation at the City of Hope Comprehensive Cancer Center in Duarte, California, has emphasized education as a cornerstone of patient empowerment for the MPN community. Through patient advocacy forums and one-on-one conversations with patients, Snyder has helped people with MPNs live with hope, strength and courage.

“I'm heading soon toward retirement. And I have sadness, but I also feel gratitude that I've been able to contribute, as I have to build on the work of people who have come before me, as well as what I've shared with my colleagues around the country around the world over 36 years,” he said during the event. “I've tried to dedicate myself to our patients, to being the best clinician, the best doctor that I can be for our patients. And I try to bring patients and families along in this journey that we're all traveling together.”

Passion for Advocacy

Hon. Col. Dr. Samuel Verniero, Jr., has spoke with authority for individuals with disabilities because he knows what it’s like to live with one. He lives with PV and various other medical conditions.

He has used his public platform and contacts on various boards and commissions to “push really hard” to raise awareness for people with MPNs and other disabilities. He continues to work for change and voice the need for additional MPN research that could improve the lives of patients with MPNs.

“He always uses these things to bring awareness to the MPN community, even if he's meeting with someone in passing, he never misses an opportunity to share it,” said Sam’s girlfriend Lanora Kelley during the event. “He's got the kindest, most compassionate heart. He's constantly doing just every little thing to help another person.”

A Team of Heroes

Erik Lohrmann, Vice President of Oncology at CURE® Media Group, thanked those who attended the virtual event.

“MJH Life Sciences and CURE® magazine, with support from Incyte, are honored to recognize these eight individuals who have dedicated their lives and careers to improving the care for MPN patients,” said Lohrmann during the event. “To Incyte, on behalf of MJH Life Sciences, CURE®, and our heroes, thank you for making tonight possible. Lastly, to our heroes, you've each gone above and beyond in your own unique way and are truly the embodiment of what the heroes award represents.”

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