Here to Listen: How Be The Match is Showing up for African American Communities

Welcome back to "Black Blood Heals." with host Tamara Weston.  In today's episode, we dive into the critical world of stem cell donation and transplantation. Our esteemed guest, Dr. Brandon Blue, a hematologist-oncologist, brings his invaluable insights to the table as we unpack the crucial role of HLA markers in finding stem cell donor matches, the urgent need for increased African American representation in donor registries, and why this ethnic disparity exists.

We'll explore the barriers to participation, such as a lack of awareness and education within the African American community, and discuss strategies to boost donor numbers. With African Americans currently having only a 29% chance of finding a stem cell match, Dr. Blue highlights the significance of diverse registries, the importance of tailored healthcare education, and the advancements in mismatched donor trials that offer new hope.

From the medications, like filgrastim, that prepare potential donors, to the details of autologous and allogeneic transplants, we'll leave no stone unturned. Dr. Blue also addresses the broader systemic changes needed within healthcare, emphasizing diverse representation among providers, and encourages a culture of openness regarding health issues.

Join us as we tackle how we can support those affected by blood-related cancers, the journey of patients preparing for transplants, and why your role in this fight is more important than ever. It's time to close the gap, one donor, one education session, one life-saving stem cell transplant at a time. 

Get Involved

• Join the Donor Registry: https://bit.ly/3UGiU1S
• Visit NMDP for resources: https://bit.ly/48moDxd

Black Blood Heals is produced by Adode Media www.adodemedia.com

Welcome back to Black Blood Heals. This week your host Tamara Weston explores the inspiring story of Donna and Tiana. Tiana, a selfless stem cell donor from Ohio, shares her journey of joining the registry and becoming the life-saving match for Donna, who faced the challenges of myelofibrosis.

Initially, Donna struggled with the complexities of her diagnosis, but her sister's proactive decision to seek the best Cancer Hospital in Houston set the stage for a life-changing event. Donna couldn't believe it when she heard that not just one, but two donors had been found. It was her second chance at life. Tiana's perspective adds a unique layer to the narrative. Tune in to learn about her initial hesitations and the selfless act that followed. She flew from Atlanta to donate bone marrow in DC, grappling with the emotional weight of potentially saving a life. 

Join Us as we explore the depths of their experiences, triumphs, and the profound impact of a second chance at life. Don't forget to share this episode with your friends and family, and visit bethematchblk.orq to learn more about how you can join the registry.

Get Involved

• Join the Donor Registry: https://bit.ly/3UGiU1S
• Visit NMDP for resources: https://bit.ly/48moDxd

Black Blood Heals is produced by Adode Media www.adodemedia.com

In today’s episode you’ll be joining Tamara Weston as she discusses the mental preparation required to become a member of the stem cell registry and the potential consequences of choosing not to go forward with a stem cell transplant when you are called to donate. Joining Tamara this week is Caitlyn Squire, a Donor Services Social Worker at Be The Match. 

Caitlyn’s role was created in 2019 to help and support the donors, whom we would not be here without. We know that there is this crazy thing called life that can change our best intentions. If you join the registry when you’re 18, but you get that call at 35, your life is going to look very different. How can you turn a no, that was once a yes, into a yes? Tune in to find out. 

At the end of the day, joining the registry is about giving hope, it’s about giving opportunity. You could give someone 3 more months of kissing their kids at night, or an extra 3 years that could help them get to their son's graduation or their daughter's wedding. It’s our job here to inspire, to educate and to help you make the best decision for you, whether or not that’s donating. Hopefully this episode has helped inspire you to join the registry, because in the end it will take all of us to save one of us. 

Get Involved

• Join the Donor Registry: https://bit.ly/3UGiU1S
• Visit NMDP for resources: https://bit.ly/48moDxd

Black Blood Heals is produced by Adode Media www.adodemedia.com

Imagine being the mother of three children with a life threatening disease. A disease that doesn’t care about age, time or place. How do you bottle the strength, the faith and the will to beat a disease that doesn’t fight fair? Today Tamara Weston is joined by Millapar Dahn, Founder and CEO of MTS Sickle Cell Foundation Inc and the mother of three daughters suffering from sickle cell disease.

Get an insight into the work that Millapar is doing for the sickle cell community and what her day to day life looks like as the mother of three daughters suffering from sickle cell disease. Over the last ten years her children have endured over 10 surgeries and over 100 blood transfusions but throughout this episode you’ll hear how this inspiring mother has been fueled by these battles to help this community in so many ways. 

June 19th is also sickle cell awareness day so Millapar invites you to use your Juneteenth events to help spread awareness for this disease because it really will require us to heal us. Share this episode to help raise awareness and visit mythreesicklers.org to learn how you can get involved with Millapar and the work that she’s doing for the sickle cell community. 

Resources:

• Find ways to help at https://mythreesicklers.org/ 
• Subscribe to the podcast and tune in each week
• Spread the word, share this podcast with a friend
• Visit https://bethematchblk.org to learn more about how you can join the registry 

Get Involved

• Join the Donor Registry: https://bit.ly/3UGiU1S
• Visit NMDP for resources: https://bit.ly/48moDxd

Black Blood Heals is produced by Adode Media www.adodemedia.com

Welcome back to Black Blood Heals. This week your host Tamara Weston is joined by Acute Myeloid Leukemia (AML) survivor and Be The Match advocate, Jermaine Reid. It’s been 13 years since Jermaine was diagnosed with AML and treated with a bone marrow transplant.  In 2010, he had a feeling that he needed to go to the doctor, and it was this decision that saved his life.

Throughout this episode you’ll meet the nurses, doctors and patients who inspired him, who helped him heal, and who made him laugh along the way. Now, being connected with Be The Match has  given him a platform to share his story, inspire others and bring infectious joy into the lives of everyone he meets. 

Tune in to find out what Jermaine is doing with the second chance at life that he was given, thanks to receiving a life changing bone marrow transplant. Don’t forget to share this episode with your friends and family, and visit bethematchblk.org to learn more about how you can join the registry. Because it will take all of us to save one of us. 

Get Involved

• Join the Donor Registry: https://bit.ly/3UGiU1S
• Visit NMDP for resources: https://bit.ly/48moDxd

Black Blood Heals is produced by Adode Media www.adodemedia.com

Welcome back to Black Blood Heals by Be The Match. This week, your host Tamara Weston is joined by Stephanie Lerach, senior immunogenic specialist at Be The Match. Stephanie and her team work with Be The Match to help transplant centers find the best matches for searching patients. You’re going to want to get a pen and paper ready because this episode is going to dive into the technicalities of HLA typing, how our genes and proteins work, and how Be The Match actually finds donor matches for patients. 

HLA testing is complex and around 70% of patients are going to have to turn to the registry to find a match. So let’s dive into what HLA testing is and why it’s important. This episode will cover what it takes to find a match but you’ll also learn about how your HLA tissues help protect your body, where you get your HLA typing from and a deeper insight into the role that ethnic background plays in stem cell donation. 

Black Blood Heals is here to act as a resource and break down barriers to help you feel more comfortable joining the registry, and more confident in understanding the process of stem cell donation. Visit bethematchblk.org to learn more about joining the registry and remember, it will take all of us to save one of us. 

Get Involved

• Join the Donor Registry: https://bit.ly/3UGiU1S
• Visit NMDP for resources: https://bit.ly/48moDxd

Black Blood Heals is produced by Adode Media www.adodemedia.com

Welcome back to Black Blood Heals with your host, Tamara Weston. This week Tamara is joined by Jocelyn Thompson, an advocacy specialist with Be The Match. In this episode you’ll get a chance to learn more about the government relationships that Be The Match has formed with local and federal lawmakers, and why those relationships are so important for protecting donor’s rights and furthering the research needed to save lives. 

The story of Henrietta Lacks has been shared time and time again in regards to medical research, her cancer cells, which were taken without her consent have raised important ethical questions about medical research and patient rights. Today Be The Match works with advocates and lawmakers around the country to ensure the safety and ethical treatment of both donors and recipients.

Tune in to learn more about some of the ways that Jocelyn and her team are working with lawmakers to fund research projects and help provide donors with job protection if they need to take time away from work to donate. Visit https://bethematch.org/advocacy to become a digital advocate and to learn more about how you can help Jocelyn and her team work directly with lawmakers to make a real difference in your community. Because it will take all of us to save one of us.

Get Involved

• Join the Donor Registry: https://bit.ly/3UGiU1S
• Visit NMDP for resources: https://bit.ly/48moDxd

Black Blood Heals is produced by Adode Media www.adodemedia.com

This week on Black Blood Heals, Tamara Weston is joined by Constance Benson 10 years after the bone marrow transplant that saved her life and cured her of sickle cell anemia. Choosing to receive the bone marrow transplant wasn’t an easy decision for Constance. She had spent her whole life thus far dealing with her pain and with her disease. So much of her identity was wrapped up in sickle cell anemia.

With the support of her incredible family, and her younger sister who was her donor, Constance was able to be cured and she finally got to live a life without pain. Now, she joins us with her inspiring story, diving into the details and steps of getting her bone marrow transplant. Constance shares her truth, helps break down myths about bone marrow transplants, and shares with an honest clarity her pain and her journey learning to live again.

Constance has a powerful message of advocacy and reminds you that if the people in your life and more importantly, if the doctors in your life are not advocating for you, are not hearing you, then they are replaceable. Constance’s message: Your life is worth fighting for. Always advocate for yourself and do what is best for you

Learn more about Be the Match and join the registry at bethematchblk.org. In the end, it will take all of us to save one of us.

Get Involved

• Join the Donor Registry: https://bit.ly/3UGiU1S
• Visit NMDP for resources: https://bit.ly/48moDxd

Black Blood Heals is produced by Adode Media www.adodemedia.com

Welcome back to Black Blood Heals. This week Tamara Weston is joined by Jessica Henry, manager of the Biorepository Services at Be the Match. Today they are talking about what happens once you swab and send your sample back to Be the Match.

When you hear the names Henrietta Lacks or Tuskegee Experiment, what does that mean to you? Those are names that for generations have been passed down within the African American communities along with a fear of doctors, of health institutions, of giving blood, DNA and organs. All of that stems from those names and those similar to them, both past and present.

Be the Match knows they have a responsibility to be transparent about what happens to your sample from the moment your swab arrives in their facilities. Join this virtual tour of the biorepository, as Jessica and Tamara explain what it means to be on the registry and answer questions like, how long your sample is stored, what your sample is used for and what happens if you want to be removed from the registry.

Learn more about Be the Match at bethematchblk.org and share this podcast to help educate, inspire and provide resources to those looking for a cure to blood cancer and blood diseases, either for themselves or someone they love. Because it will take all of us to save one of us 

Get Involved

• Join the Donor Registry: https://bit.ly/3UGiU1S
• Visit NMDP for resources: https://bit.ly/48moDxd

Black Blood Heals is produced by Adode Media www.adodemedia.com

Welcome back to Black Blood Heals, this week your host Tamara Weston is joined by Dr. Elizabeth Stenger, a pediatrician with further training in hematology-oncology (blood cancer and blood and marrow transplants). Dr. Stenger is also an assistant professor at Emory University and its affiliate with Children’s Healthcare of Atlanta.

In this episode, Dr. Stenger is answering some of the top questions we get from our community about the risks and the process of donation. She explains the differences between related and unrelated donors, the differences between blood and bone marrow transplants and so much more. You’ll get an inside look into the research that’s being done to make transplants safer and a deeper understanding of the process for both patients and donors, and the risks involved.

Get Involved

• Join the Donor Registry: https://bit.ly/3UGiU1S
• Visit NMDP for resources: https://bit.ly/48moDxd

Black Blood Heals is produced by Adode Media www.adodemedia.com