A Guide to Caring for Each Other: An MPN Patient and Care Partner from Patient Empowerment Network on Vimeo. MPN Network Managers Jeff and Summer dive into how they care for one another. Although, Jeff is the sole care partner for Summer who is living with myelofibrosis admits to still having to care for him […]
Health Equity and Myeloproliferative Neoplasms (MPNs) from Patient Empowerment Network on Vimeo. MPN Network Managers Jeff and Summer share their thoughts on how health equity can impact various MPN patients. They focus on a big factor in equity and MPN patients being location. Unfortunately, not everyone may have access to a specialist due to their […]
What You Need to Know Before Choosing a Cancer Treatment from Patient Empowerment Network on Vimeo. Download Guide Haga clic aquí para ver en español What steps could help you and your doctor decide on the best treatment path for your specific cancer? This animated video explains how identification of unique features of a specific […]
Around 1.8 million people were diagnosed with cancer in the US in 2019, and for those living with cancer, work can be an important part of their life. While providing much-needed financial security, including health benefits, it also offers routine, a sense of normality, and boosts self-esteem. However, for many people undergoing treatment or survivors wanting to return […]
“PEN builds community and empowers you to be your own advocate.” – Vanessa Steil, thyroid cancer survivor and patient advocate. When Vanessa Steil recounts how she was first diagnosed with thyroid cancer, you can tell it is a story she has told many times. The dates, the terminology, and which doctor told her what and […]
MPN Patient and Caregiver Explain How Colors Impact Their Lives from Patient Empowerment Network on Vimeo. Are you conscious of the colors in your home? MPN Network Manager Summer and her care partner Jeff have their respective homes filled with colors that bring them joy. They prioritize mindfulness and positivity as part of Summer’s healthcare journey. Jeff challenges you to surround yourself with colors that put your mind and body at ease. Want […]
From PEN-Powered Activity Guide V, beloved medical oncologist Dr. Bora Lim of The University of Texas MD Anderson Cancer Center walks us through what a clinical trial is, the phase of how drugs get approved, and how the pandemic crisis has amplified the criticality of clinical trials. What is a Clinical Trial? What is […]
Counteracting MPN Fatigue and Finding Adequate Rest from Patient Empowerment Network on Vimeo. MPN Network Manager Summer Golden who lives with myelofibrosis, and her care partner Jeff, discuss how they handle her fatigue. From tracking sleep on smartwatches to choosing optimal dinner and travel times — they do not let fatigue boggle them down. Watch as […]
For over 30 years, doctors in Utah have been perplexed by the number of childhood cancer survivors being admitted to hospital with breathing difficulties in the winter. Last year, new research finally began to shed light on the link. The importance of air quality to recovery is widely recognized, but could it be that air quality continues to be […]
Tips for Traveling During COVID with a Blood Disorder from Patient Empowerment Network on Vimeo. PEN MPN network managers Summer and Jeff take us on the road for their annual camping trip in the Julian forest in Southern California. What are some of the challenges of traveling with a blood disorder? Both share tips on […]
Partnering With Your Doctor on CLL Treatment Decisions from Patient Empowerment Network on Vimeo. Which CLL treatment could be right for you? Dr. Steven Coutre, a CLL specialist, reviews current approaches and explains why patients should stay informed about emerging options. Dr. Steven Coutre is a Professor of Medicine in the Hematology Department at Stanford University […]
Maria Bellefeuille is the NORD Rare Action Network Volunteer State Ambassador for Illinois. In advance of this weekend’s Living Rare, Living Stronger Patient and Family Forum, Maria answered some questions about being both a rare disease patient and advocate. Advocate Perspective Please tell us about yourself and why you decided to become a rare disease […]
How is Acute Myeloid Leukemia (AML) Treated? from Patient Empowerment Network on Vimeo. When diagnosed with Acute Myeloid Leukemia (AML), understanding available treatment options can be overwhelming. Dr. Alice Mims, an AML specialist, provides an overview of AML therapies and discusses factors to consider when deciding on an appropriate therapy with your healthcare team. Dr. […]
Pairing Old and New Therapies Effective AML Combination Treatment: Pairing Old and New Therapies from Patient Empowerment Network on Vimeo. With advances in AML research and a number of new treatments, can older therapy types still play a role in care? Dr. Alice Mims discusses pairing early AML treatments with new agents to boost their […]
