Plasma Cell Leukemia Support Group Launch

Name: Plasma Cell Leukemia Support Group Launch
Start: 2021-01-28T11:00:00-07:00
End: 2021-01-28T12:00:00-07:00

Jan 28, 2021

11:00AM - 12:00PM MST

Online Event

Overview

If you or your loved one is diagnosed with Plasma Cell Leukemia, please come to our first-ever meeting for the Plasma Cell Leukemia Support Group. The purpose of this group will be to connect, educate, and support PCL patients and their families and caregivers. In this first meeting, we will be introducing ourselves, watching a few videos, and talking a little about treatment regimens that have worked or not worked. We are excited to see you there! This will be a Google Meets meeting. This means that we will have a virtual face to face discussion. If you do not have a Gmail account, please join this meeting using a desktop or laptop computer. If you have a Gmail account and you would like to join via mobile phone or tablet, please make sure that you have the Google Meets app downloaded. If at any point you run into problems, please email audrey@healthtree.org and we will try to help you troubleshoot and join our meeting! Thank you.

Agenda

11:00 AM

Introductions

Audrey Burton-Bethke

The purpose of the chapter is explained.

11:05 AM

Video Presentations

HealthTree University

Two videos from HealthTree University about PCL are shown.

11:15 AM

Group Introductions

Audience

We want to hear from you! Where do you live? Are you a patient or a caregiver? Where are you being treated? How long have you lived with PCL? At what stage of treatment are you in (newly diagnosed, relapsed, or multiple relapses)?

11:50 AM

Paul Kleutghen Intro and Survey explanation

Paul K

Paul presents a little more about his story, explains the survey which we will be sending out to all registrants.

Speakers & Moderators

Paul Kleutghen

I am a patient diagnosed in 2014 with primary plasma cell leukemia (pPCL), a rare and aggressive variant of multiple myeloma and have been very fortunate to find treatment at the division of Cellular Therapy at the Duke University Cancer Institute. My wife, Vicki, and I have two adult children and a grandson who is the ‘light of my life’. Successful treatment has allowed Vicki and I to do what we love best : traveling the world, albeit it with some extra precautions to keep infections away. My career in the pharmaceutical industry has given me insights that I am currently putting to use as an advocate to lower drug pricing, especially prices for anti-cancer drugs and, very specifically, CAR-T therapies, with recent contributions posted by Health affairs, the Institute for Clinical and Economic Review and the Centers for Medicare and Medicaid Services.

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.