be the match

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 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

On today’s episode, I’m talking to UConn Associate Vice President for Research Development Dr. Lindsay DiStefano about getting involved.

Lindsay is a full Professor and prior to becoming AVP for Research Development, was most recently head of the Department of Kinesiology at UConn, where she researches sports-related injury prevention. She trained as an athletic trainer, choosing it for the opportunity to take an active clinical role. This attitude of getting involved echoes in all parts of her life, especially when it comes to her kids. Lindsay is the founder of Be the Wonder, a foundation devoted to supporting families navigating rare diseases, which came from her and her husband's experiences as parents of kids with a rare immunodeficiency. 

We talk about:

• Breaking free from our expectations of ourselves
• Taking things one step at a time
• The balance between overthinking and thinking critically

You can find the show notes and more resources at https://madamathlete.com

Keep an eye out for new content or let us know what you'd like to see next by following us on social:
Instagram: @theMadamAthlete
Facebook: @MadamAthlete
Twitter: @MadamAthlete

Dr. Andrew Campbell, Director of the Comprehensive Sickle Cell Disease program at Children's National Hospital in Washington, D.C graces our presence on the show. Dr. Campbell enlightens us with the latest in cures for sickle cell disease, educates us on first-of-its-kind legislation, the Sickle Cell Disease Treatment Centers Act of 2022, natural remedies, and many more insights about Sickle Cell Disease and Bone Marrow Transplant that you can't miss.

This episode is a must-share for anyone who is personally or knows someone who is experiencing sickle cell anemia. Press play now!

Welcome back to Black Blood Heals. This week, your host Tamara Weston is joined by Chelsy Shoger, marketing research manager at Be The Match. Learn  how Chelsy and her team work specifically to engage the community and encourage them to open up to sincerely share with us why they will or why they will not join the registry.

Chelsy has heard countless, first hand stories about the mistreatment of patients within Black and African American communities that have continued to spread distrust and fear towards the healthcare industry. In this episode you’ll hear the real world hurdles that the community faces from a fear of seeing their own doctor for a physical to a mother still being mistreated simply because of the color of her skin.  

Tune in to learn more about what Be The Match does with the community feedback that Chelsy’s team gather, and how Be The Match is working to show up 365 days a year, as opposed to 28 days for Black History Month. Subscribe to Black Blood Heals and share this episode to help raise awareness for the work that Be The Match is doing to help grow the donor registry within ethnic and African American communities. 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

Making the decision to go through a transplant is a difficult, if not heart wrenching, decision.  How does one make the decision to go through transplant? Where does the peace come from to move forward with a life changing decision? This episode reveals insights that helped Sofia's family make this difficult choice. Other topics include: Sofia's mental and emotional state leading up to the transplant, donor match types, finding your support system, and preparing financially to go through the transplant process. 

This week Tamara Weston is joined by Xavier Brandon, Supervisor of HBCU Programs at Be The Match. Learn how both Xavier and Tamara got involved with Be The Match and the work that’s being done on the ground, in our communities to help the registry for Be The Match grow.

Community involvement looks like being outside, having those difficult conversations with people and busting those myths around bone marrow and stem cell transplants. There’s a deep distrust between Black and African American communities and the healthcare industry. The most important work that Be The Match can do is rebuild that trust, and that’s simply work that cannot be done with digital campaigns and social media. 

Today, Xavier is training the next generation of interns and change makers with Be The Match. Throughout this episode you’ll feel his passion for Be The Match, his reminders that this has to be a community movement, and that we all have to work together to save each other. 

If you only take away one piece of advice from this episode, it’s a reminder to be bold. You weren’t put on this earth to be mediocre, you were put on this earth to make an impact and change a life. 

Get involved with Be The Match today, 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

There are over 70 blood disorders known today. Diseases like Leukemia, Lymphoma, and Sickle Cell Anemia – but did you know that a cure can exist? This season of Black Blood Heals is going to focus on providing you with information from experts, patients, and life-saving change makers to learn more about stem cell and bone marrow transplants. 

Black Blood Heals is a resource for anyone looking for information about these transplants as a possible cure. In each episode, your host Tamara Weston will share facts, dispel myths and talk with experts and guests whose lives are impacted by a need for stem cell transplants. 

Tune in every week to learn how you can help change the lives of some of the most vulnerable in our communities. 

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

Timestamps:

0:00 Intro

01:54 How did you get started in the field of histocompatibility?

03:44 Was that a mentor that helped you find this new role and pathway, or was there a particular patient that you took care of that opened your eyes to these other possibilities in lab medicine?

05:28 What are a few things that you think healthcare professionals in general should understand about organ transplantation?

07:51 Maybe for you, as someone who was practicing first in orthopedic surgery, and then making this transition to systems thinking, what has that been like and how do you navigate that now?

09:23 How does the laboratory and histocompatibility support organ transplantation? What kind of work happens behind the scene that enables this transplant to be as successful as possible?

11:53 Is the laboratory involved with the care of the transplant patient beyond the acute transplant? What does that look like?

13:09 What do you predict is on the horizon for histocompatibility?

14:50 How could somebody support organ transplantation?

16:47 Outro

Kate Arnold underwent a stem cell transplant for Non-Hodgkins Lymphoma 12 years ago.  She joins us today to discuss her best survivorship tips for every step of the process.

First, you need a goal--- a "why."  For Kate, she wanted to get her young daughters through high school.  Today, they are both in college.

Throughout this process, listen to your gut.  ASK QUESTIONS - there are no stupid questions, even if they seem trivial.  Make sure you have a medical team that you are comfortable with.  Despite many options available in Chicago, Kate opted to have her treatment at MD Anderson Cancer Center in Houston.

It's also important to find humor in your situation. Kate says she and her husband were very open about their story, and weren't afraid to crack jokes.  Also, even if you have cancer, you still have a life beyond that. Kate talks about dancing in the kitchen with her kids.

Make your mental health a priority.  Through the Cancer Wellness Center, Kate found a therapist that had a specialty in oncology - she was uniquely qualified to talk about all aspects of the process - even those dark thoughts that creep into a patient's head.  She learned that adjusting to a gratitude mindset was very helpful.

Because she wasn't afraid to speak up for herself, Kate often got direct phone numbers for doctors and other staff. She tells us a story about when that came in very handy.

Often, when you have cancer, well-meaning friends and family can say some pretty awful things.  Kate and Peg talk about ways to pivot the conversation away from difficult topics, horror stories, or simply bad advice.

Kate is very open and honest about regrets she has had through this whole process.   She wishes she had secured mental health help for her kids earlier, and she also wishes she'd been more compassionate toward bad behavior. She encourages any parent with cancer to think about where their children's outbursts are coming from.  In fact, it was something her youngest said that gave her clarity.

All patients - and all treatment centers - are different.  Advice and protocols change between them.  It's important to listen to your medical team.

Links: 

MD Anderson Cancer Center: https://www.mdanderson.org/

Imerman Angels: https://imermanangels.org/

Be The Match: https://bethematch.org/

Other Resources

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

nbmtLINK YouTube Page can be found by clicking here.

Thank you to this season's sponsors:

The Leukemia & Lymphoma Society, www.lls.org

Sanofi: https://www.sanofi.com/

Join Faith In Action host, Joanne Fox, for her enlightening interview with Patrick Demers and his donation of stem cells through Be the Match, a national stem cell and bone marrow registry.

Contact Siouxland Catholic Radio 88.1 FM:

• Email us at fhcradio@fhcradio.com
• Send us a message via Facebook or Instagram

Listen to Siouxland Catholic Radio on-air at 88.1 FM, online, TuneIn app, and NOW the Siouxland Catholic Radio App available on the Apple App or Google Play stores!

Help Siouxland Catholic Radio keep bringing you Faith In Action with Joanne Fox, Scriptural Rosaries, and other programs. Donate here now!

Thanks for listening and keep podcasting!

SHOW NOTES

4:35 – 35th wedding anniversary

5:25 – key qualities to a strong and meaningful relationship

6:00 – team approach

6:45 – facing unexpected fears, head on, one day at a time

7:25 – discovering inner strength

7:55 – Olivia, the amazing daughter and sister

9:05 – Special Love, Inc., Tom and Sheila Baker

9:35 ­– BRASS Camp

11:10 – Ryan, first cancer diagnosis at two years old

11:35 – ordinary family with an extraordinary circumstance

11:50 – leukemia meets it match with Ryan’s grit

15:00 ­– choosing hope is choosing life

15:15 – Make-a-Wish trips

16:15 – leading through advocacy

17:05 – management is key

17:45 – gratitude for such remarkable support – it kept us going, it keeps us going

19:25 – Camp Fantastic (Special Love, Inc.)

20:15 – no one wants to join the club of parents of children with cancer

21:00 – adult skills learned as a child through trial and error

23:30 – rhythm of life, impact on traditions, a roller coaster of life

24:35 – bringing home a puppy in the midst of the challenges

25:45 – ready to go to the hospital on a moment’s notice

27:10 – selecting quotations that capture the essence of one’s thoughts and intended message

29:05 – meeting Ryan’s bone marrow donor, Scott Harris

31:05 – consider joining the bone marrow registry

32:00 – graft versus host disease can be deadly

32:40 – Sharon and Lee Johnson, the ultimate role models and friends

35:15 – manufacturing sunshine

36:00 – Ryan’s loud pants

37:05 – writing a second book (Joyride Journeys)

38:30 – naming our cars and upcoming cross-country driving trip

39:20 – post-traumatic growth and gains

40:05 – how do we channel our loss?

41:40 – advocate for yourself

Focused Fight book

Ryan’s speech

Camp Fantastic

Bone Marrow Registry 

Terri’s website

Post-Traumatic Growth article

Music for Lead. Learn. Change. is Sweet Adrenaline by Delicate Beats

Podcast cover art is a view from Brunnkogel (mountaintop) over the mountains of the Salzkammergut in Austria, courtesy of photographer Simon Berger, published on www.unsplash.com.

Professional Association of Georgia Educators  

David’s LinkedIn page

Meet donor extraordinaire Jeramy Davies.  He’s not only a bone marrow expert, but he is a two-time donor, having donated both bone marrow and a kidney to the same person.  This in itself is unique to have donated twice, but so is his story.  Jeramy and his recipient Kelly have not only crushed her Hodgkin's Lymphoma together, but they have created a lifetime bond through the process.

For the thousands of people diagnosed every year with life-threatening blood cancers like leukemia and lymphoma, a cure exists. They can get a bone marrow transplant and be cured of their disease.  Over the past 30 years Be the Match operated by the National Marrow Donor Program, has managed the most diverse marrow registry in the world. They work every day to save lives through transplant.

Check out this incredible story of two strangers brought together by chance, who share much more with one another than kidneys and bone marrow.

Show Links

Join the Bone Marrow Registry

Learn more about living kidney donation (NKDO)

Donor Diaries Website
Donor Diaries on Facebook

Butler Buzz Host, Tricia Pritchard, and Armstrong In The Loop Podcast Host, Seth Prentice, collaborate to bring this very important episode to "Be The Match For Jax."

Jax is a 6 year old, Zelienople Native who was diagnosed with a rare autoimmune disorder called IPEX in October 2021. Join us as we search for a 'perfect' bone marrow match for Jax to save him from this life threatening disease.

Missy, mom of Jax, and Lisa Maloney, Be The Match National Marrow Registry, are our guests to talk about how we can help find a match for this precious boy.

For more information or to get involved:

https://www.gofundme.com/f/find-jax-a-match?qid=0483441daaedf34f10eced64a95b0ac7


https://www.facebook.com/bethematchforjax

https://my.bethematch.org/s/join?language=en_US&joinCode=jax&refUrl=ENDREFURL

Diagnosis: Acute Lymphoblastic Leukemia (ALL). 

Merely 45 years old at the time, this wonderful lady has much to share in the past three years! Kelly has had two transplants, the second being a haploidentical transplant, a haplo. Get ready to be inspired. 

Note: At the time Kelly recorded this podcast with us in the spring, she was in remission. Since then, she has had a relapse but we are so happy to say she is getting through this next chapter and hoping to make a full recovery. 

The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.

For more from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.

This season of Marrow Masters is sponsored by the nbmtLINK, Jazz Pharmaceuticals and The Leukemia & Lymphoma Society.

nbmtLINK Website: https://www.nbmtlink.org/

The Leukemia & Lymphoma Society: https://www.lls.org/

In this week's episode the Two Guinea Hens: Rosie and Gabby discuss a bunch of different topics ranging from ABC's Speechless to donating Bone Marrow to admitting to an environmental crime in the 90's to our Mother's signature when killing spiders to being PRO FARM and PRO MILK (sorry PETA). They also discuss birth order, death (duh), the perks of Pittsburgh and musician David Gray.

Visit the website: www.twoguineahens.com for more information on our hosts.

Jersey Shore Family Vacation aired 31 episodes this year - and Jersey Shore Fanily Reunion was there for every single one of them. This week the gang discusses Angelina not getting pounded out in a long time, poop meteors falling out of planes, and our very first anti-malapropism! JSFV just got renewed for a third season (coming this summer), but you won't have to wait that long to hear more of us - that's right, we're gonna roll out an expanded universe of Fanily Reunion pop culture topics in the meantime! Vacation may be over...but the Reunion continues.

If you're interested in learning more about Deena's bone marrow donor organization, you can find it at join.bethematch.org/jerseyshore. 

Thanks for listening!!!

jerseyshorefanilyreunion@gmail.com
ig: @jerseyshorefanilyreunion
twitter: @fanilyreunion