Caregivers Are In Good Company

After caring for her father who passed from terminal leukemia when she was just 12 years old, Rosalyn Carter found herself caring for her widowed elderly grandfather. These early life experiences prompted former First Lady Rosalyn Carter to start the Rosalyn Carter Institute for Caregivers (RCIFG).

According to the RCIFG, there are currently 53 million caregivers in America. While each caregiver experience has its own unique set of circumstances, some experiences were shared across cultures and disease-type. Issues such as finding time for self-care, building a caregiver support community, juggling complex schedules, increased financial burden, missing work, having to leave the workforce prematurely, or having to return to the workforce, possible feelings of exhaustion, guilt, resentment, and alienation from friends and family are some commonly reported experiences. Interestingly, despite the large number of caregivers in the US, the feeling most often communicated is that of isolation. Learn more

A Patient's Story: A Labor of Love

When I was thirty years old, I was diagnosed with Essential Thrombocythemia. After several years of adjusting to that diagnosis, my life became very routine. Time moved along and in 2016 I was diagnosed with myelofibrosis. Although I always knew that myelofibrosis was a possibility, I must admit the diagnosis shocked me. Treatment started and we met with a transplant doctor to search for a donor. Much to our surprise we discovered that I had no donors in the registry.

The disappointment in my diagnosis and not being a candidate for a transplant was the motivation I needed to start helping myself and others. My community helped me host donor drives and raise money for BeTheMatch. We added over one thousand donors to the registry in three donor drives! I joined Facebook groups that were specifically for myelofibrosis and from these groups, I learned that patients consider the date that they receive their new stem cells as their new birthday, which inspired me to make and send "Happy Birthday" pillowcases to patients undergoing a stem cell transplant. Learn more

Dr. Raajit Rampal, Memorial Sloan Kettering, discusses symptom management and answers patients questions.

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Tremblay’s Approach to Cytoreduction Across MPNs

Douglas Tremblay, MD, assistant professor of medicine at the Icahn School of Medicine at Mount Sinai, discusses the factors that influence the decision to recommend cytoreduction for patients with essential thrombocytopenia (ET) and polycythemia vera (PV).

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Hobbs Highlights Key Research in Hematologic Malignancies at the 2023 ASH Annual Meeting

Ruxolitinib (Jakafi)-based combinations continue to demonstrate promising ability to address splenomegaly and a signal toward improvement of tumor-related symptoms in myelofibrosis.

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Dr. Vincelette on MYC Expression in Myelofibrosis

Nicole D. Vincelette, Ph.D., postdoctoral fellow, Moffitt Cancer Center, discusses findings from a study investigating the role of MYC expression and S100A9-mediated inflammation in a subgroup of triple-negative myeloproliferative neoplasms (MPNs).

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