MPN Patient and Caregiver Explain How Colors Impact Their Lives

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 to connect with Jeff and Summer? Email them at question@powerfulpatients.org

Patient Advocates Turned Award-Winning Network Managers

The Patient Empowerment Network (PEN) is rolling out the red carpet to congratulate and celebrate two of our dedicated and passionate Network Managers, who are being recognized as outstanding patient advocates. Their enthusiasm for helping other patients navigate their cancer journeys exemplifies PEN’s mission of ensuring all patients have the resources they need to access the best possible healthcare and achieve the best possible health outcomes. We are proud of our growing team of Network Managers and grateful for their engagement in the PEN community.

Summer Golden, recognized for her advocacy through the PEN Network Manager program, has been named a Voice of MPN 2020 MPN Hero. The MPN Hero award is given to those who have demonstrated a strong commitment to making a difference in the lives of people with myeloproliferative neoplasms (MPNs). Summer, who lives with myelofibrosis (MF), understands the MPN journey and has helped thousands of patients through the Network Manager Program. She, and her husband, Jeff Bushnell, who became her care partner when she was diagnosed, reach out to patients in the MPN community through e-newsletters, program development, and support groups. Summer makes connections with others through compassion and humor. Yes, humor. She says, “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.”

Jeff/Summer 2020 MPN Hero Red Carpet Debut from Patient Empowerment Network on Vimeo.

 Dr. Gerri Smoluk was a PEN Acute Myeloid Leukemia (AML) Network Manager and was recently named a finalist for the Reuters Patient Champion Award in the Patient Advocate category. Gerri was a drug development scientist and patient advocate who was diagnosed with AML in 2016. She made it her mission to help patients ask the right questions of their care teams. She used her knowledge to help patients learn about medications for and the latest information about their disease. Using her science background, Gerri developed tangible resources to help other AML patients. She felt she had an advantage and made it her mission to use that advantage to help empower others to make better decisions. Gerri passed away July 27, 2020. Her legacy lives on inspiring other Network Managers to help more patients become empowered.

Gerri Smoluk – PEN AML Network Manager from Patient Empowerment Network on Vimeo.

 The PEN Network Manager program is a volunteer group of patient empowerment ambassadors from around the country. Designed to further enhance health literacy, the program was launched in March 2020 and has grown exponentially. The volunteers engage with PEN’s network of cancer patients and families with the goal of providing support and navigation on their path to empowerment. Find out how you can get involved here.

How an MPN Patient and Caregiver Make the Most of Life

How an MPN Patient and Caregiver Make the Most of Life from Patient Empowerment Network on Vimeo.

 MPN Network Manager Summer who lives with myelofibrosis and her care partner Jeff discuss the importance of not putting your life on hold. Summer continues to work on her comedy routine and Jeff has been enjoying ZOOM photography classes. Watch to hear how else Summer and Jeff continue to make the most of life despite any challenges that may present itself. 

“We have not put our lives on hold during COVID or as a result of Summer’s MF diagnosis. Our challenge to you is to do the same.” 

Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org

Counteracting MPN Fatigue and Finding Adequate Rest

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 Summer shares her personal experience with fatigue and provides tips to overcome. 

“We challenge you to find a way to make changes in your life that you get adequate rest. It’s really, really important.” 

 Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org

Tips for Traveling During COVID with a Blood Disorder

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 how to make the best of traveling during COVID.

“Planning is key when you are traveling during COVID.”

The Importance of Finding a Myeloproliferative Neoplasm (MPN) Specialist

The Importance of Finding a Myeloproliferative Neoplasm (MPN) Specialist from Patient Empowerment Network on Vimeo.

How can MPN patients find a specialist? Patient Empowerment Network MPN managers Summer and Jeff share how they met their myelofibrosis specialist, Dr. Tiffany Tanaka, who gave them confidence about their path to empowerment.

Listen as Summer and Jeff share specific valuable tips for connecting to the best resources.

How to Be a Good Care Partner 101

How to Be a Good Care Partner 101 from Patient Empowerment Network on Vimeo.

 What is the most important aspect of being a good care partner? MPN Network Managers, Jeff and Summer give tips on best practices for being a phenomenal care partner. Jeff breaks down his strategy for managing Summer’s myelofibrosis, including modifying their schedules due to Summer’s fatigue.

Most important tip?
Jeff: “To be a good caregiver, you have to take care of yourself.”

Want to connect our MPN Network Managers, Jeff and Summer? Email them, question@powerfulpatients.org

MPN Patient and Care Partner Share the Importance of Staying Positive and Setting Goals

MPN Patient and Care Partner Share the Importance of Staying Positive and Setting Goals from Patient Empowerment Network on Vimeo.

In the midst of a crisis, it’s quite difficult to set goals. With so much changing rapidly, how can we keep focus?

PEN MPN Network Managers Jeff and Summer share tips for tapping into resilience, keeping focus and setting goals. Both share their rituals for staying focused and having fun.

Want to connect with Jeff and Summer? Email them at question@powerfulpatients.org

Cancer Patient and Care Partner Tips for Keeping Busy During A Pandemic

Cancer Patient and Care Partner Tips for Keeping Busy During Pandemic from Patient Empowerment Network on Vimeo.

MPN managers Summer and Jeff share tips for keeping busy during a crisis. They both share how exercise, scrapbooking, and zoom improvisational theater has kept them occupied.

Summer, who lives with myelofibrosis, shares her experience with getting her regular blood draw and some of the new procedures in place allowing her visit to be smooth.

How are you keeping busy? Let Summer and Jeff know: question@powerfulpatients.org

Service as Medicine: Cheer Someone Else Up and Cheer Yourself Up

Service as Medicine: Cheer Someone Else Up and Cheer Yourself Up from Patient Empowerment Network on Vimeo.

MPN Network Managers, Summer and Jeff sheltering in place from San Diego, California, challenge listeners to be less consumed with worry by looking at service as medicine. They share how their theater programs, mentoring others and church activities have empowered them to give more of themselves and focus on the positive.

What activities do you enjoy that help you serve others? Share it with Jeff and Summer! question@powerfulpatients.org

How Can MPN Patients Amplify Their Voice?

How Can MPN Patients Amplify Their Voice? from Patient Empowerment Network on Vimeo.

MPN Network Managers Jeff Bushnell and Summer Golden, a husband and wife team, share how they cope with a diagnosis of myelofibrosis. Both highlight the importance of patients and care partners amplifying their voice as part of the coping process.

The Importance of Living in the Moment

The Importance of Living in the Moment from Patient Empowerment Network on Vimeo.

Jeff Bushnell and Summer Golden, MPN Network Managers at the Patient Empowerment Network share the importance of truly living in the moment. Summer shares how Betty Boop, her pink poodle, was diagnosed with lymphoma. Fortunately, Betty was able to pull through, emerging as resilient. Both Jeff and Summer were inspired by Betty Boop, to redefine what it means to live in the moment. They both share how living in the moment has allowed them to cope with Summer’s diagnosis of Myelofibrosis.

What activities keep you living in the moment? Share it with Jeff and Summer! question@powerfulpatients.org

Meet Our MPN Network Managers: Jeff and Summer

Meet Our MPN Network Managers: Jeff and Summer from Patient Empowerment Network on Vimeo.

Our MPN Network managers, Summer Golden and Jeff Bushnell of San Diego, California, discuss how a diagnosis of myelofibrosis–a rare blood cancer of the bone marrow–almost derailed their lives. Jeff and Summer share how transforming their fears, using comedy as medicine and becoming more knowledgeable about myelofibrosis led to them becoming more empowered partners in care.