Sarah Downey

Sarah Downey

This week, we speak with Sarah Downey, an angiosarcoma patient, advocate, and writer. Sarah takes us through her diagnosis journey, which included misdiagnosis and dismissal of symptoms, all while navigating her senior year of college. Since her diagnosis, she has navigated treatment as she’s entered young adulthood, and shares with us what it’s been like coping with the uncertainty of sarcoma alongside this major life transition. A lifelong writer, Sarah recently began the project Echoes of Us RI to highlight stories of fellow patients, medical professionals, and caretakers, contributing to narrative medicine as a form of advocacy. Sarah explains how this has played a role in her journey, and also given her both an outlet and a purpose. When she isn’t writing or at treatment, Sarah travels as much as she can (and gives some tips on how she makes this work between treatments!), and talks about how she chooses to live despite her prognosis. This episode will both educate and inspire - true to Sarah as a writer and a human. Resources: Subtype Page: curesarcoma.org/sarcoma-subtypes/angiosarcoma/ [https://curesarcoma.org/sarcoma-subtypes/angiosarcoma/] Discussion Guide: curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/ [https://curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/] Sarcoma Stories FB Group: www.facebook.com/groups/512452631597704 [https://www.facebook.com/groups/512452631597704] Connect with Sarah: Sarah’s Instagram: : www.instagram.com/sarah.downey20/ [https://www.instagram.com/sarah.downey20/] Echoes of US RI Instagram: www.instagram.com/echoesofusri/ [https://www.instagram.com/echoesofusri/] Echoes of Us RI: www.echoesofusri.com/ [https://www.echoesofusri.com/]

Gianna Cericola

On this episode, we speak with Gianna Cericola, a survivor of Desmoplastic Small Round Cell Tumor (DSRCT for short). After two long years, she rang the bell signifying the end of active treatment just two weeks before we recorded this episode. We feel so lucky to be able to sit down with her at this pivotal moment of transition. Gianna opens up about what being done with treatment actually means, and why the end of treatment isn’t the end of a cancer diagnosis. She shares about how she’s relied on self-advocacy, not only to receive a diagnosis but to navigate treatment and conversations with her medical team. As an adolescent young adult, Gianna talks about continuing to live her life through her diagnosis - including getting engaged during treatment and thinking about surrogacy to one day build her family - and why it can be difficult to plan for the future. This episode is full of raw and honest insight into Gianna’s experience, and we are so grateful for the time she took to share with us. We also wanted to note and give insight to a conversation we have about Gianna’s subtype being classified as ultra-rare. Sarcoma is a rare cancer to begin with, but within the numerous subtypes of sarcoma, there are some, like DSRCT, that are considered “ultra-rare” - defined as subtypes with an annual incidence of 1 or fewer cases per million people. Thank you Gianna for giving voice to the experience of being diagnosed with an ultra-rare subtype. Subtype Page: https://curesarcoma.org/sarcoma-subtypes/desmoplastic-small-round-cell-tumor/ [https://curesarcoma.org/sarcoma-subtypes/desmoplastic-small-round-cell-tumor/] Discussion Guide: https://curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/ [https://curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/] Sarcoma Stories FB Group: https://www.facebook.com/groups/512452631597704 [https://www.facebook.com/groups/512452631597704] Connect with Gianna: Gianna’s DSRCT Group: https://ig.me/j/Abb-dS58-Ff-DnKH/ [https://ig.me/j/Abb-dS58-Ff-DnKH/] Instagram: @gianna.cericola https://www.instagram.com/gianna.cericola/ [https://www.instagram.com/gianna.cericola/] TikTok: https://www.tiktok.com/@gianna.cericola [https://www.tiktok.com/@gianna.cericola]

Tasha Nathan

On today’s episode we’re sharing the sarcoma story of one of our Sarcoma Stories hosts, Tasha. Tasha has been hosting Sarcoma Stories since its inception in November 2024 and she’s now sharing her story about her Embryonal Rhabdomyosarcoma diagnosis. We also talk about some of the transitions happening at SFA with Tasha’s role as she embarks on a new endeavor, starting her program - Move Anyway - while welcoming Katie Wintergerst to the podcast as co-host. Let’s dive in! Subtype Page: https://curesarcoma.org/sarcoma-subtypes/embryonal-rhabdomyosarcoma/ [https://curesarcoma.org/sarcoma-subtypes/embryonal-rhabdomyosarcoma/] Connect with Tasha: IG @tashanathan_ [https://www.instagram.com/tashanathan_/] @moveanyway_ [https://www.instagram.com/moveanyway_/] Email: hello@move-anyway.com [hello@move-anyway.com] Move-anyway.com [http://Move-anyway.com]

Pan Pantziarka

On this episode, we speak with SFA Director of Europe’s Strategy and Engagement, Pan Pantziarka. While he is an incredible staff member at SFA who supports SFA’s global work, he also has a sarcoma story of his own as a care partner to his son, George. After George was diagnosed with three different primary cancers and passed in 2011, Pan quit his job in the corporate sector and found work in oncology. He is committed to making a difference using everything he can - scientific training, advocacy, and demand for change. He speaks to us today about rare cancer predispositions, such as Li Fraumeni Syndrome, the story of George and his mother, why knowledge is power, and where he finds hope. We are so lucky to not only have this conversation with Pan, but to have him on the team at SFA, striving for answers for sarcoma patients and their families. Thank you Pan, for all you do for the sarcoma community. Subtype Page: https://curesarcoma.org/sarcoma-subtypes/osteosarcoma/ [https://curesarcoma.org/sarcoma-subtypes/osteosarcoma/] Sarcoma Patient Pathways Survey: https://curesarcoma.org/get-involved/sarcoma-patient-experience-survey/ [https://curesarcoma.org/get-involved/sarcoma-patient-experience-survey/] Discussion Guide: https://curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/ [https://curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/] Sarcoma Stories FB Group: https://www.facebook.com/groups/512452631597704 [https://www.facebook.com/groups/512452631597704]

Kate & Kristen

In this episode, we sit down with Kate DeForge, who was diagnosed with undifferentiated pleomorphic sarcoma as a young adult. Kate opens up about what it’s been like navigating young adulthood with sarcoma, and shares the mindset and philosophy that have shaped how she lives her life since her diagnosis. We’re also joined by Kate’s sister, Kristen, who offers her personal perspective on being on the sarcoma journey with a sibling. She reflects on her role in Kate’s care and how she helps bring a sense of normalcy to everyday life. It’s immediately clear that Kate and Kristen are a dynamic duo. They balance one another, communicate with the unspoken understanding that only siblings share, and together tell a powerful, honest story of how sarcoma is truly a family disease. Thank you, Kate and Kristen, for joining us and sharing your journey. Subtype Page: https://curesarcoma.org/sarcoma-subtypes/ewing-sarcoma/ [https://curesarcoma.org/sarcoma-subtypes/ewing-sarcoma/] Sarcoma Patient Pathways Survey: https://curesarcoma.org/get-involved/sarcoma-patient-experience-survey/ [https://curesarcoma.org/get-involved/sarcoma-patient-experience-survey/] Discussion Guide: https://curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/ [https://curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/] Sarcoma Stories FB Group: https://www.facebook.com/groups/512452631597704 [https://www.facebook.com/groups/512452631597704] Connect with Kate: Kate IG: @blueforkate https://www.instagram.com/blueforkate/ [https://www.instagram.com/blueforkate/]