Thalassemia: It's in Our Blood

In part 2 of our trilogy discussing the perspective of children whose parents have thalassemia, meet Julia and Maria - an inspiring daughter-mother duo with an unbreakable bond.

Maria has transfusion-dependent thalassemia and is a fierce global advocate in her role as executive board member of the Cooley’s Anemia Foundation and the Thalassemia International Federation. She has touched countless lives around the world.

Julia shares how her mother’s journey with thalassemia has shaped her own life - she has taken her mother’s pain and struggles and turned them into hope and light as she has become an advocate herself. She is keenly aware of how fortunate patients are who have access to safe blood and clean hospitals, making her wise beyond her years.

Thalassemia has forged this unique bond and their love shines through in this episode that is filled with raw honesty, humor, and compassion. Julia’s advice for other children whose parents live with thalassemia: “…you are their shine…you are their bright…say I love you every day and make them smile!” 

As the producers of “Thalassemia: It’s In Our Blood” we pride ourselves on innovation. Part of this has been introducing topics that have never been talked about, or, discussed very little. We strive to  give people, who have not had the opportunity, a platform to share their stories.

This episode - the first in a trilogy - highlights the perspective of children whose parents have thalassemia.

Please join us as we talk to Jessica Horstmann and Ryan Colasanti, children of the esteemed Ralph Colasanti - a thalassemia patient, a husband, a father, a grandfather, and the National President of the Cooley’s Anemia Foundation (CAF).

Jessica and Ryan openly share what it was like being raised by a father who is surviving thalassemia: what lessons they learned, how thalassemia has shaped their family, their motivation for being happy, being positive, and adopting their father’s motto “YOLO”.

For more information on the Cooley’s Anemia Foundation: www.thalassemia.org

Today, International Thalassemia Day 2026, marks the one year anniversary of the first episode of "Thalassemia: It's In Our Blood."

We are beyond fortunate to have Dr. Maria Domenica Cappellini as our guest to help us mark this important occasion. We are dedicating this special episode to honouring her more than four decades of brilliant, life-changing work that has transformed the lives of patients worldwide. We are truly privileged to talk with her today as she shares her invaluable expertise to help us better understand the evolving needs of the aging thalassemia population.

In this episode of Thalassemia, It’s in Our Blood, guest Tobias Larkin shares his journey from living with Thalassemia in the U.S. to building a life in Taiwan as an English teacher.

He reflects on his diagnosis, the steps that helped him turn a high school dream into reality, and his experience receiving transfusions and care in Taiwan.

Tobias’s story is an inspiring look at what may be possible for people living with Thalassemia who are considering a move, whether across their country or around the world, while managing their health.

Our community often asks about pregnancy and parenthood with Thalassemia—which is why we dedicated episode 10 to this topic.  

Linda Black reached out after hearing the podcast, eager to share her story and raise awareness about Thalassemia and pregnancy. Linda, a 33-year-old stay-at-home mom and patient in the US, naturally conceived twins who are now 3 years old. Hear her story and why it's a testament to embracing miracles amid genetic challenges, inspiring hope for others.

This Valentine’s Day, we honor a love that continues to shine.  A mother’s love that has turned pain into purpose. In this heartfelt episode, Shermin shares the story of her daughter, Menaal, who passed away at 18 from complications following a bone marrow transplant for thalassemia. Just two years into her grief, Shermin speaks about how she keeps Menaal’s light alive each day.

Through Menaal4Life, Shermin and her family and friends have led blood drives to raise awareness for thalassemia, supported Canadian Blood Services, donated food to local shelters, and have helped make and distribute over 200 sandwiches to those in need. They have also established the Menaal4Life Scholarship at the University of Calgary.

On her Instagram, Menaal4Life Menaal is remembered as “the strongest person we will ever know — concentrated with love, and lived her life to the fullest.” This episode is a story reminding us that love lives on through loss.

Join us for an inspiring Episode 8 where patient voices from around the world share heartfelt New Year 2026 messages for the thalassemia community.

John Zuke, now 53, is a nurse anesthetist and the oldest US patient cured of thalassemia. John shares openly about decades of transfusions from childhood, his experience at 52 undergoing gene therapy through Zynteglo, and his vibrant life now—transfusion-free, married with boys aged 14 and 17, and working hard, playing hard.

John's light shows us that a lifetime's fight can end in cure; we're thankful for his inspiring voice.

As people living with thalassemia and those who live with chronic illness and rare disease, we are especially grateful for medical advances and scientific breakthroughs. Join us as we talk  with guest, Aliya Rinaldi, about growing up with thalassemia and then her journey towards a cure as one of the pioneer patients undergoing bluebird bio’s gene therapy trial for Zynteglo, Aliya’s story is some about courage, determination and hope. Aliya has been transfusion free for a decade and is  still an active and integral  part of the thalassemia community. We are so grateful to Aliya for paving the way for other patients who want to undergo gene  therapy, which is now an FDA approved treatment.

On today’s episode we talk to Dina Steagall whose beloved mother, Merula Steagall, passed away from thalassemia at age 56. Merula started Abrasta and Abrale, the Brazilian non-profit organizations for thalassemia and blood cancers.

About having a mother with thalassemia, Dina quotes, “we have warriors as our role models and we have so much to learn from them…she was my role model…she was an angel in my life…I admire her so much.”

Dina has embraced advocacy and carries on her mother’s legacy with light, love and compassion.

This episode airs in honor of Merula Steagall on her birthday, October 22nd.

Check out Abrale and Abrasta online and follow their social media pages:

https://abrasta.org.br/

https://abrale.org.br/english/