Selinexor Stories: Share Your Experience in the Selinexor Support Group image

Selinexor Stories: Share Your Experience in the Selinexor Support Group

Feb 24, 2021
11:00AM - 12:00PM MST
Online Event
Overview

Join us for the second session of our Selinexor Support Group. This time, as we meet in a more interactive way, you will hear from two patient advocates (Chrissy and Bob) and then have the chance to share your story. We are here to connect, educate, and support patients who are currently being treated with selinexor, caregivers of patients on selinexor, and those patients who are considering selinexor as treatment. Come join us as we share our selinexor stories. This is a Google Meet meeting. You can join even without a Gmail account. If you are joining via mobile, please download the Google Meet app from your App store.

Agenda
11:00 AM
Introductions
Audrey Burton-Bethke
Audrey introduces the purpose of the chapter, event agenda, and our two Patient Advocates. 
11:05 AM
Presentations
Bob Sisneros and Chrissy Degennaro
Bob and Chrissy give longer introductions about themselves and why they wanted to serve in our group as Patient Advocates. 
11:20 AM
Share Your Story
Audience
Take 1-2 minutes to share your story. There will be prompts to guide you. If you don't want to participate, but want to hear from others, simply turn off your camera and you won't be called on. We are excited to hear your story! 
Speakers & Moderators
Healthtree contact Audrey Burton-Bethke

Audrey Burton-Bethke

Audrey joined the Myeloma Crowd as the Community Manager in 2020 after previously working in the nonprofit field for 4 years as a director of Fundraising and Development. She graduated from BYU with a major in Spanish and Nonprofit Management. Audrey is passionate about serving others, loves learning, and enjoys a nice mug of hot chocolate no matter the weather.

Healthtree contact Robert (Bob) Sisneros

Robert (Bob) Sisneros

Bob was diagnosed with myeloma unexpectedly in 2015 through a traumatic experience. After recovering and a failed SCT, he is working his way through other chemotherapy cocktails. Bob is extremely charismatic, loves his wife and family, and is a coach for the Myeloma Crowd if you would like to connect with him. He believes in the power of hope and is a Patient Advocate for our Selinexor Support Group.

Healthtree contact Chrissy Degennaro

Chrissy Degennaro

Chrissy Degennaro is a true myeloma warrior. Diagnosed at 36 years old, only a year and a half after giving birth, her entire life was altered. After 2 stem cell transplants, 2 CAR T cell therapies, and 27 other chemo regimens, Chrissy was lacking options and ready to throw in the towel. However, after overcoming her hesitancies about the new drug selinexor (or XPOVIO), she has been continuing to fight for the last year. Chrissy is charismatic, family-oriented, and a wonderful Patient Advocate for our Selinexor Support Group.

Healthtree contact Julie Butt

Julie Butt

Julie is from Cincinnati, OH and has over 30 years of oncology nursing experience. She has been a Nurse Liaison in the Multiple Myeloma therapeutic arena for the past 7 years. Some of her primary responsibilities include: Providing disease state educational presentations and on-label product presentations to nurses, physicians, & pharmacists. She also focuses on developing strong long-term relationships with clinical personnel, advanced practice provider opinion leaders, key nurse opinion leaders, advocacy organizations, key nursing organizations, and societies focused on the nursing segment. The most fulfilling part of her nursing role is her interactions with the patients at the support groups. She is impressed and inspired daily by their depth of knowledge particularly as it relates to the therapeutic regimens and ongoing clinical trials.