Gaps in Myeloma Education: A Community Driven Discussion image

Gaps in Myeloma Education: A Community Driven Discussion

Aug 22, 2023
06:30PM - 08:00PM EDT
Online Event
Overview

Often within the myeloma world, there are gaps in education that leave patients and caregivers alike feeling confused and frustrated. We gather as a myeloma community in this event to talk about the common misunderstandings or misinformation that's being spread in order to identify gap areas of education and clarify critical information for the community's understanding, overall well-being, and ultimate survival.

This event cannot be successful without your help. The Florida Myeloma Community is asking for myeloma patients and caregivers from across the world to participate in the following survey to identify the most common gaps.

Share the Gaps in Your Myeloma Education

Are there acronyms you just don't understand? Are you struggling to understand the difference between the myeloma medications? Are you frustrated with the conflicting nutrition advice that's given?

While we can't solve all of your concerns in one session, we do believe that identifying these educational gaps and solving what we can together can be a springboard to a myeloma cure for all.

Agenda
6:30 PM
Introductions
Audrey Burton-Bethke

Audrey introduces herself and the panelists. She begins the discussion by explaining why we wanted have this specific session. 

6:35 PM
Survey Summary
Patricia Flores and Marilu Flores Najera

Paty and Marilu explain the most common "gaps" that were shared in the survey. They share answers to the top questions. Resources are going to provided to help answer common questions and concerns. 

7:05 PM
Group Discussion
Audience

The audience is free to share other myeloma gaps, questions, or concerns that they might have. Remember, the purpose of today won't be to necessarily answer all of the questions that you have, but identify where we can focus our education efforts this year and in the years to come. 

Speakers & Moderators
Healthtree contact Audrey Burton-Bethke

Audrey Burton-Bethke

Audrey joined the HealthTree Foundation as the Myeloma Community Program Director in 2020. While not knowing much about myeloma at the start, she has since worked hard to educate herself, empathize and learn from others' experiences. She loves this job. Audrey is passionate about serving others, loves learning, and enjoys a nice mug of hot chocolate no matter the weather.
Healthtree contact Rozalynn Hite

Rozalynn Hite

Rozalynn Hite is the Patient Community Director and leads the HealthTree Coach program. She is also a myeloma caregiver to her husband Richard, and mother to three children. Rozalynn is passionate about providing support, education, and resources to help others live full and meaningful lives.
Healthtree contact Patricia Flores

Patricia Flores

Patricia is an International Medical Graduate who joined HealthTree in 2020 as part of the Patient Experience team. She helps patients understand and track their lab & genetic test results as well as relevant information from their health history. She loves ballet, traveling, and reading a good science fiction book as often as possible.
Healthtree contact Ana Sahagun

Ana Sahagun

Ana is an Engineer and a Psychotherapist, she has experience in both fields and loves them equally. She leads the Patient Experience Team at HealthTree and she’s passionate about talking to patients and empowering them. Whenever she’s not working you’ll find her exploring the world, eating different kinds of food, hiking or skiing.
Healthtree contact Valarie Traynham

Valarie Traynham

Valarie embarked on her myeloma journey back in 2015, and ever since she's been on a mission. As a resilient myeloma thriver, her passion lies in not just navigating her own path but also in illuminating the journey for others. With a steadfast commitment to understanding the intricacies of the disease, she champions education, shedding light on health inequities that often lurk in the shadows. Driven by a profound belief in fairness, Valarie tirelessly advocates for equitable access to top-tier healthcare, clinical trials, and tailored treatments. Her journey as a beacon of knowledge and support began when she assumed the role of a support group leader. Today, she continues to extend her hand as a myeloma coach, mentor angel, and the guiding force behind the Black Myeloma Health Community. Valarie's voice echoes far and wide as she fearlessly confronts the disparities faced by myeloma patients. Through collaborative efforts with healthcare providers, she strives to forge pathways to solutions, ensuring that every individual receives the care they deserve. Join Valarie on her journey of empowerment and advocacy as she lights the way toward a brighter, more equitable future in myeloma care.
Healthtree contact Cynthia Chmielewski

Cynthia Chmielewski

Cynthia Chmielewski is a professional educator and myeloma advocate. As a former teacher, she now teaches myeloma patients how to advocate for themselves as the Director of HealthTree University.
Healthtree contact Marilú Nájera Flores

Marilú Nájera Flores

Marilu Najera is an International Medical Graduate and an Event Operations Manager at the HealthTree Foundation. Her journey through several patient-centered roles has deepened her passion for advocacy, education, and connection. Now, as part of the education team, she is leading efforts to grow HealthTree’s newest community: ALL (acute lymphoblastic leukemia). She organizes patient-friendly webinars with expert speakers and works to ensure that patients and families feel informed, empowered, and supported. Marilu brings empathy, joy, and warmth to every project. Outside of work, she loves to travel, connect with others, and spend time with her loved ones—especially her nephews (being an aunt is her absolute favorite role in life!).