Myeloma Team Podcast

Today's guests are Mrs Lilie Head, President of “Voices for our Father, Legacy Foundation”, and Lilie’s sister Joyce Christian. 

Joyce and Lillie’s Father, Freddie Lee Tyson and Mr. Tyson’s  “bad blood” is the reason we’re here. It’s a horrible and complicated part of our country’s history begun nearly a century ago that compounded a culture of distrust and created seemingly insurmountable fissures.

Voices For Our Fathers Legacy Foundation was organized in 2014 by the descendants of the 623 men unethically and immorally treated in the United States Public Health Service Syphilis  studies from 1932 - 1972 in Tuskegee, Alabama. 

Voice For Our Fathers, Legacy Foundation is a 501(c)3 non-profit organization that connects descendants across generations, provide annual scholarships to descendants, and participates in the Research Project: “The Untold Story”, as well as offers support and guidance to the Tuskegee University National Center for Bioethics in Research and Health Care while pursuing all other strategic plans. 

According to VOICESFORFATHERS.ORG, Voices for Our Fathers Legacy Foundation  sets the record straight concerning the United States Public Health Service Syphilis Study that was conducted over 4 decades from 1932 to 1972. 623 African American men in Macon County, Alabama were treated like lab rats without their knowledge or consent. They were lied to. This event damaged us all and now African American communities have understandably built giant walls distrusting the motivation of healthcare providers. Especially relevant during this global pandemic.

Voice For Our Fathers exists to tell the story of the affected Tuskegee families and to share their truth. 

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We started this podcast to serve all who are affected by Myeloma, but in 2020 we’ve recognized that there are so many similarities with others living with different cancers and chronic illnesses that we can’t leave them out of the conversation. The Myeloma Team podcast has evolved this year to take on topics that matter to all of you. You get to hear it from two very unique people advocating from a similar point of view.

Thanks for letting us be a part of your lives. Let's shoot for more conversations in 2021!

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Today, in Episode 7, we’re honored to talk to Adam Hayden, a writer, speaker, and patient advocate for glioblastoma, the deadliest and most aggressive of brain cancers, which accounts for nearly 45% of all brain cancers. This is a scary disease and fatal for 95% of those diagnosed.

Adam was diagnosed with brain cancer in 2016, while finishing up his Masters in philosophy. Adam has taken his education and experience and put it to good use, to write and speak about about philosophy, illness, and healthcare from his unique perspective. He is a highly respected patient advocate in the brain tumor community, and he is a vocal supporter of palliative care.

If you want to follow Adam on Twitter at @adamhayden. His blog is glioblastology.com.

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This week, Yolanda and I kept it casual. We have no interviewees, but we just missed talking. We had a conversation about whatever struck our fancy.  One thing that came up was smoldering myeloma, MGUS, and the anxiety that comes with not knowing whether you’re going to progress to full blown Myeloma.

Production note: I apologize for the first 10 minutes of really poor sound quality. My microphone was facing the wrong direction. Sit back, relax, fast forward if you need to, and let us know that you're listening.

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8/27/2020

Today, we had a fascinating interview with David Emerson of https://peoplebeatingcancer.org/. 

David led us down a tale of non-traditional medicine, Stanislaw Burzynski, antineoplaston therapy, and the flexitarian diet.

Fascinating stuff that honestly just leads to more questions. We need to get this dude back some day!

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Today, we’re keeping it light. We’re talking about my friend Yolanda, what she has going on in her world, how she’s managing and how you can reach out to her directly.

 

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In light of everything that’s going on in the world, we want to be real and discuss it. What’s going on? There is a global pandemic and hundreds of thousands of people are dying in the U.S. and all over the world. 

After a string of racially insensitive (perhaps racially motivated?) deaths at the hands of law enforcement and the general mistreatment of people of color by our criminal justice system since the founding of our nation, the world is waking up. Protests, riots, and a generally increased awareness of inequity has flown around the world faster than the coronavirus. 

How do these things affect us as people living with cancer and us as just people?

This is heavy, so let’s talk it out.

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At the beginning of this conversation, we talked to Dr. Gormley about the discrepancies, disparities and general distrust of our healthcare providers here in the US within african american communities. Today, we continue that discussion and ask how do we solve this? Where do grass roots begin to grow?

This isn’t a conversation that’s going away anytime soon. Yolanda and I have lots of questions for Dr. Gormley, but there are no easy answers. 

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This is the Myeloma Team Podcast. 

Yolanda and I have come together to offer our perspective on Multiple Myeloma. She’s a fashion designer from Brooklyn and I’m a nonprofit director from Asheville, North Carolina.

For all our differences, Yolanda and I have something in common - we’re both living with multiple myeloma, and we both know the value of purposeful movement, and healthy and active lifestyles, even when fighting cancer. We strive to be a source of inspiration and education for patients, caregivers, and healthcare providers and anyone who supports them. We want to be your accountability partner.

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