Sarcoma Stories

On this episode, we’re joined by Emily Oberst, an Ewing sarcoma survivor.

Emily shares her experience navigating childhood cancer — from the decision making around surgery as an active young person to considering fertility preservation at an age when most kids are thinking about school, sports, and friends.

As she transitioned out of treatment and into young adulthood, Emily found empowerment through adaptive sports. Discovering whe...

On this episode, we sit down with Dan Rubin, who was diagnosed with Ewings sarcoma in 2017 and has since navigated many, many different types of therapies to manage his diagnosis.

Dan’s unique record keeping system, which we dive into throughout the episode, along with the incredible support of his wife Katharine, has allowed Dan to navigate his care and advocate for himself throughout the years.

Dan has had to make numerous informed...

On this episode, we speak with Brian Fugere, who is a synovial sarcoma survivor of 20 years. Brian shares his perspective on what the sarcoma landscape looked like 20 years ago at the time of his diagnosis, taking us through his treatment journey and how his marathon running has been an outlet for him to not only give back to the sarcoma community, but also reclaim his life.

We are so fortunate to be able to be a part of Brian's ref...

On this episode of Sarcoma Stories, we welcome Shaun Nerney—actor, singer, performer, Dorito enthusiast and avid Knicks fan—to share his journey as a care partner to his fiancée, Meghan, who has been living with fibromyxoid sarcoma on the dura of her brain. Shaun reflects on meeting Meghan after her diagnosis, how his role has grown alongside their relationship and her treatment experience, and how running has become both a way to ...

On this episode, we speak with Margaret Livermore, a member of SFA's Public Policy Committee and a dedicated advocate for the sarcoma community. Margaret shares her experience with leiomyosarcoma, first diagnosed in 2002 and recurring 16 years later. She discusses the importance of self-advocacy for informed decision-making and the value of supporting others facing similar situations.

The conversation also addresses systemic inequit...

Join us as we speak with Katie Wintergerst, who shares her personal experience with synovial sarcoma. Katie discusses the importance of seeking multiple opinions at sarcoma centers to make informed treatment decisions and provides valuable insights into participating in early-phase clinical trials. We also explore her journey as a single parent of two young children while living with sarcoma, her impactful advocacy work, her leader...

On this episode we speak with Jenny Sage, a parent of a pediatric sarcoma survivor, Gracie. Jenny shares her perspective on advocating for children with sarcoma and others in the sarcoma and pediatric cancer communities. We discuss supporting children and families through a sarcoma diagnosis, the importance of emotional processing, and ways to help others.

Jenny’s Instagram: @jgoodmansagehttps://www.instagram.com/jgoodmansage/

Jenny...

Mike Cacioppo, diagnosed with osteosarcoma in 2021, shares his experience of being a part of the sarcoma community as well as the amputee community and how advocacy for both has become a part of his life. He also talks about parenting while navigating a sarcoma diagnosis and how he maintains an optimistic mindset through all of the challenges he's faced.

Mike's Subtype: https://curesarcoma.org/sarcoma-subtypes/osteosarcoma/

Sarcoma S...

On this episode, Maria shares the sarcoma journey of her daughter Aubrie, who was diagnosed with CIC-DUX4. Maria speaks about the diagnosis experience of a teenager, including having conversations about fertility preservation before starting chemo and ways she's honoring Aubrey after her passing. While working to fulfill her daughter's bucket list, Maria has also been the driver for helping SFA bring the Race to Cure Sarcoma to Aus...

In this episode, we speak with the Brenneman family who lost their father and husband, David, 12 years ago. We discuss the care partner experience of navigating a spouse's sarcoma diagnosis while also raising young children and what it has been like for the family to find connection to David after his passing. The Brenneman family shares about how this experience has fit into their lives and evolved over the years and talk about th...

We're thrilled to welcome Susie Donohue, a uterine leiomyosarcoma survivor, for our third episode! We talk about navigating a new sarcoma diagnosis, what exactly a sarcoma center is, and the decision to disclose or not disclose your diagnosis at work.

Join us after the episode on our new Sarcoma Stories Facebook group to discuss the episode. https://www.facebook.com/groups/512452631597704

Discussion Guide: https://curesarcoma.org/sfa...

We're thrilled to welcome Jenna Pothier for our second episode! Join us as this DFSP survivor shares the importance of shared decision making between care team, patient, and care partners. She also talks about the challenges of being an adolescent young adult going through a life changing diagnosis during big life transitions, finding supportive communities and purpose in advocacy work, and shares her advice on supporting someone d...

Join us for our first episode of our new podcast "Sarcoma Stories". We're thrilled to welcome our first guest, Natasha Allen! Join us as this synovial sarcoma survivor shares her inspiring journey, from diagnosis and clinical trials to using social media as a therapeutic tool and platform for awareness.

Join us after the episode on our new Sarcoma Stories Facebook group to discuss the episode. https://www.facebook.com/groups/5124526...