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CURE Honors Nine Who Help People with Rare Blood Cancers

At the MPN Heroes Event, Olympic skater Scott Hamilton discusses importance of advocacy and research.
BY Beth Fand Incollingo
PUBLISHED December 01, 2018
Olympic figure skater Scott Hamilton has weathered some tough situations, and he emerged from those struggles with a mission.

He came away from those challenges with a desire to help others, and that’s exactly what he’s done within the cancer community — not only by founding advocacy organizations, but by speaking with those affected by the disease to spread a message of hope and encouragement.

Hamilton shared that message when he took the stage at CURE®’s Sixth Annual MPN Heroes celebration, held on the eve of the annual American Society of Hematology meeting in San Diego, California on Nov. 30. In his talk, the Olympic gold medalist, sports commentator and author found common ground with the evening’s nine honorees, who have also dedicated themselves, despite obstacles, to improving life for others in the myeloproliferative neoplasm (MPN) community.

The eight heroes and one Canadian champion work in support of people with MPNs: polycythemia vera, essential thrombocythemia and myelofibrosis. They are patient advocates, clinicians, communicators and research catalysts who provide education, emotional aid and care for those with MPNs, as well as research into new treatments — in many cases while their own lives are threatened by the conditions.

“Tonight, we celebrate life…and the work being done to create better outcomes and keep families together,” Hamilton said. “We are here to celebrate life and these honorees, who are all spectacular. Every breath is an opportunity and a miracle, and we’re here to celebrate miracles tonight. We can if we all link arms and make a difference.”

Michael J. Hennessy, Jr., president of MJH Associates, parent company of CURE Media Group, voiced the organization’s pride in giving the awards.

“Every year, we look forward to honoring these outstanding caregivers and advocates who have made a difference in the lives of people with MPNs,” he said. “We congratulate each MPN Hero for their heroic contributions every day in the field of MPNs or in the individual lives of people with MPNs.”

The event was sponsored by Incyte Corporation and eight patient advocacy organizations.

Commitment to the Individual

Four recipients from across the country were honored in the category of “commitment to the individual” — two patient advocates, a nurse and a 12-year-old caregiver.

Jean Diesch, a patient advocate from Gibsonia, Pennsylvania, was nominated by Angela Austin for her work with the Pittsburgh-area MPN Family Support Group, which she founded in 2013. Diesch, a patient with an MPN herself, gives special meaning to the group’s name, as she treats its members like family, according to her nominator. In addition, Diesch leads efforts to raise research money through the Leukemia & Lymphoma Society’s (LLS) Light the Night campaign, and brought in $13,000 this year. She also volunteers to speak with patients with MPNs through Hamilton’s 4th Angel Patient and Caregiver Mentoring program and Imerman Angels.

“No matter how big or little your involvement with patients, it all makes a huge impact,” she said. “Often, people are not getting support from their families. They don’t see us being sick. To share an opportunity to discuss this with another person who’s going through the struggle means so much to another patient.”

Lori Jemison, RN, clinical coordinator for the malignant hematology team at Froedtert Hospital in Oconomowoc, Wisconsin, was nominated by her daughter, Briona Jemison. Jemison coordinates and runs an MPN support group on her day off, spreading the word about the group by enlisting pharmaceutical sales representatives to distribute flyers at local hospitals. She has also helped to set up support groups run by others in communities in her region.

For LLS, Jemison organizes volunteer efforts for Light the Night and speaks to legislators when pivotal bills are being considered. She’s been involved with her local chapter of the Oncology Nursing Society for more than 15 years and will be president of the group starting in January.

“I had an episode after my honeymoon and had to deal with cancer treatment,” Jemison said. “I remember how alone I felt. I was already an oncology nurse, and it hit me that there were other pieces besides our work at the bedside — everything else in (a patient’s) life. This needs to get better for people.”

Celia Miltz, a caregiver and patient advocate from West Palm Beach, Florida, was nominated by previous MPN Hero Ann Brazeau, of MPN Advocacy and Education International. Miltz became an advocate after her daughter received a diagnosis of essential thrombocythemia in 1997, at the age of 16. Miltz started Friends of ET Research, which, through annual golf tournaments, has raised $750,000 for MPN research and increased awareness about the disease. Much of the money went to Josef Prchal, M.D., who used it to make progress in identifying the genetic mutations associated with ET. About 14 years ago, the group combined its efforts with those of the MPN Research Foundation, and now Miltz and her daughter serve on that organization’s board.

“My daughter was sad and depressed that nobody (seemed to) care about her bone marrow cancer,” Miltz said. “I did this to give her hope and encouragement. I realized I would need to do more to raise money myself.”

Jaden Persaud, 12, from Monaca, Pennsylvania, was nominated by the patient he helps care for: his mother, Jessica Kuhns.

After Kuhns received a diagnosis of MPN not otherwise specified, Persaud immediately offered her care, comfort and help around the house while also starting to raise awareness and funds. He put up flyers to increase awareness about the rare condition and hosted a Lemonade for Leukemia event through LLS that raised several hundred dollars. Later, he founded Stuffies for Survivors, an effort to donate new or gently used stuffed animals to local first responders to give to children when they go on calls. Over 200 of the toys have been donated so far. In adulthood, Persaud plans to continue his work as a fund raiser and pursue a career in law enforcement with a local K-9 unit.

He recalled how upset his mother was after receiving her diagnosis, and how worried he was. “I thought, ‘What if she won’t be here when I graduate?’” he said. “I want to find a cure, because it needs to be found.”

Commitment to the Broader MPN Community

A second group of recipients — a doctor and three patient advocates — were honored for efforts that have had a significant impact on the broader MPN community.

Angela Fleischman, M.D., Ph.D., of the University of California, Irvine, was nominated by patient Beth Probert. Fleischman has long studied what drives the development of MPNs. Her main focus is chronic inflammation in MPNs, and whether this condition sparks the development of the disease or arises after the disease is present; determining this could help doctors identify patients at high risk and intervene before the disease develops, she said. Fleischman has also started a biorepository that collects live frozen bone marrow and blood samples from all patients at her center who have blood cancers; these are used by researchers to study disease. In addition, she treats patients who have MPNs.

Her advocacy work includes leading the Orange County MPN Education Group, a support group that educates and empowers members to better manage their disease and live a healthy lifestyle. In addition, she’s in charge of We Are MPN, an online platform that gives patients opportunities to participate in research studies. And, she has headed an annual full-day MPN education conference for the past two years.

“I’m very excited to be honored,” she said. “It’s a wonderful opportunity for us to celebrate the people affected by MPNs.”

Richard French is a broadcast professional and caregiver from Las Vegas who was nominated by his wife, DeeAnn French. Their daughter was diagnosed with essential thrombocythemia in 2003, and three years later, French became frustrated by the lack of awareness campaigns about MPNs — particularly on television. French vowed to get a public service announcement (PSA) about MPNs made and aired, and has spent a couple of years on the project. He called upon his connections to get the commercial made for free, and he and his wife have been contacting 840 TV stations to ask them to run it.

French encourages everyone to call their local TV stations and ask them to air the PSA, which can be found at videopsa.com.

Robert Rosen, MBA, a patient advocate who founded the MPN Research Foundation, died from complications of polycythemia vera this year. He was nominated by his daughter, Rebecca Shapiro.

When he received his diagnosis in 1997, he couldn’t find any organizations to help people with his disease, so he founded the MPN Research Foundation in 1999. Rosen spent 18 years raising funds to stimulate original research, making the organization’s first grant in 2000. The group has raised $13 million over the years and awarded grants to 60 research projects that have helped forge progress through the discovery of the CALR mutation; the first large-scale tissue and data bank, which has allowed testing of new JAK 2 inhibitors; the use of gene editing to create MPN cell lines, studies of the role of inflammation, and more. The group also informs patients about the latest research.

Shapiro described her father as a person with integrity and “a renaissance man — well-read, intelligent, an NCAA basketball athlete. There was no task he was not able to undertake.”
“We’re really honored and hope that, now that his work is being widely recognized, word will spread about the disease,” daughter Molly Guy said.

Marcy Worthington, a patient advocate from Lakeside, California, was nominated by David Denny, also a patient advocate and a previously honored MPN hero.

Worthington received a diagnosis of polycythemia vera in 2002, and soon began volunteering her services as a professional photographer at the biannual conference of the MPN Education Foundation in Scottsdale, which brings in top MPN experts to present and answer questions for patients. In 2013, she became a list owner for MPN-NET, the organization’s online support group, which answers patient emails, gives comfort, support and encouragement, and directs people to resources; she is also a regular contributor to Facebook groups about MPNs.

“I’m happy to be in a position to help people, especially people who are scared when they’re first diagnosed,” she said.

Canadian MPN Champion

Elena Liew, M.D., a clinical assistant professor in the Division of Hematology at the University of Alberta, was named a Canadian MPN champion. She was nominated by Cheryl Petruk, a founder of the Canadian MPN Network.

Liew’s clinical focus is on chronic myeloid leukemia and Philadelphia-negative MPNs, and she is the local principal investigator for several MPN-related clinical trials. She also treats patients with these diseases, helping them learn “how to fit this into their life and get back to doing what they want to.”

“This is something I love to do without any recognition at all,” she said. “The future for patients is very hopeful. There have been large advancements, and the future is bright for research and new treatments.”

Driven by Compassion

In his keynote address, Hamilton explained how he became interested in helping the cancer community.

He lost his mother to melanoma, which had metastasized to her breast, when he was 18, and then was treated for testicular cancer in 1997. After that, he has faced recurrent pituitary brain tumors; doctors now think this condition was never diagnosed in childhood, and is what made him ill and stunted his growth, forcing him to spend a lot of time in hospitals.

Yet as challenging as that illness was, it was also the reason he started ice skating. His parents would drop him off at a rink on Saturdays so that everyone could get a break from medical appointments and stress. Somehow, Hamilton found that he could more than match the efforts of healthy children on the ice, and he started growing again.

Later, as a competitor with a habit of losing, he used his mother’s memory to fuel an improvement, realizing that, to go on without her, he needed to “take her on the ice with me every day.” That ability to find strength in pain is what he encouraged the audience to pursue.

After his cancer diagnosis, “the fear was extraordinary, beyond anything I ever dealt with before,” he said. Then, he felt it “flip into an awakening of courage (I) never thought (I) had.”

Out of that grew the Scott Hamilton CARES Foundation, which funds cancer research and early-detection programs. He also founded the 4th Angel program to provide one-on-one mentoring of newly diagnosed patients by survivors. Chemocare.com is Hamilton’s website that explains specific chemotherapy treatments, how they work and what their side effects are. Finally, Hamilton recently founded a center for proton beam radiation therapy in Tennessee; the technique is designed to precisely hit cancer targets without harming healthy tissue.

“Cancer was the worst thing that ever happened to me in my life, and also the best thing,” he said. Without it, he added, “I would not have met my wife and would not have my children.”

He encouraged everyone in attendance to keep working together to fight MPNs.

“God made each and every one of us angels, but he only gave us one wing,” Hamilton said. “The only way we can truly fly is to raise each other, and that’s what we do tonight. We celebrate these people and we celebrate life.”

The evening’s awards were given by mistress of ceremonies Kathy LaTour, CURE®’s co-founder and one of the judges who selected the winners. Additional judges were Krisstina L. Gowin, D.O., Julie Libon, Lindsey Lyle, M.S., PA-C, and Andi Malitz.

The celebration was made possible with support from Incyte Corporation, a Delaware-based biopharmaceutical company focused on oncology. Also supporting the event were CancerCare, the Canadian Myeloproliferative Neoplasm Network, Cancer Support Community, the Leukemia & Lymphoma Society, MPN Advocacy & Education International, the MPN Education Foundation, the MPN Research Foundation and the National Organization for Rare Disorders. To raise awareness and to enhance research, Incyte will make a monetary donation in honor of the MPN Heroes to organizations that help individuals living with MPNs. 

 
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