Sofie’s Journey with Spina Bifida

This week, we spoke to Katie Callaghan, works with Rare Youth Revolution and runs an organization called Cards for Bravery. Tune in as we speak about Katie's experience with her own rare diseases and how she works to advocate for the rare disease community. A huge thanks to Katie for joining us on this episode!!

Happy new year! A big thank you to all of our listeners who have stuck with us so far. In this episode, we speak about the events of the past two months and what we hope to do in the next year.

Victoria’s story battling endometriosis and endosalpingiosis is one of true strength and bravery. Facing the intense pain and debilitating health issues that accompany endosalpingosis, she has struggled to get the help that she needs and deserves through all her life. Her story is one of resilience and learned to fight for oneself; it's truly an inspiring lesson in self-advocacy! Note: an earlier version of this podcast incorrectly defined endometriosis and endosalpingiosis. We have fixed the definition - sorry for the mixup!

Sofie Cox is a champion athlete and renowned dancer - she’s travelled around the world, competed numerous times, and has several awards to her name. But what you wouldn't expect is that Sofie also lives with spina bifida; a rare congenital disorder that has left her paralyzed from the waist down. Her story of strength and passion is truly inspiring, as she shows that her disability will never limit her talent and speaks out for other disabled individuals. Tune in to find out more about Sofie and how spina bifida has impacted her life!

Ali lives like many other 22 year olds - she’s a student, blogger, activist. But Ali also lives with GIST cancer. Listen through this episode to learn about Ali’s diagnosis and how she lives with this cancer. Ali’s story is extremely empowering and inspiring - thank you to Ali for sharing her story with us! 💜

Join cohost Liesha Yenduri as she discuss the various aspects and implications of Sickle Cell Disease in honor of National Sickle Cell Awareness Month. Please be sure to check out our website (https://shapingfoundations.wixsite.com/shapingfoundations) and socials (shapingfoundations) for more content! 

In honor of international ataxia awareness day, we were able to talk to Ishana Sukhbir about her diagnosis. Being diagnosed at a young age, she had a unique experience with her disease and the people around her.

This week, we talk about our rare star of the week - Tabitha L. Frank - and her journey with endosalpingiosis. Tune in to find out more about her struggle with her diagnosis and how she made her way to meeting with politicians to advocate for women with endosalpingiosis! Be sure to also check out Tabitha's nonprofit and Facebook page for endosalpingiosis: https://www.endosalfoundation.org/ and Endosalpingiosis Foundation INC. 

Hello everyone and welcome back to our podcast! This week, we have a recorded interview with Dr. Shyamala Peesapati, a dentist currently residing in Bangalore, India, who has become a powerful and inspirational voice in the rare community. She has used the experiences of her past to drive her forward and to raise awareness in the rare community, spreading positivity and hope wherever she goes. We hope you enjoy this interview with this amazing rare star! You can find her on Instagram @shyamala_peesapati and on Facebook at Shyamala Peesapati, and if you have any questions feel free to contact her!

This week’s podcast features Mackenzie Lea’s battle with trigeminal neuralgia, a rare disorder causing debilitating pain from a facial nerve. Join our co-founder Pooja Shah as she discusses Mackenzie's answers to questions about her journey to getting diagnosed, how it has impacted her social life and mental health, and what she has learned. Mackenzie’s story is inspiring - and filled with strength and courage. Enjoy! Thank you so much Mackenzie Lea for your contributions and strength! You can find Mackenzie on Instagram at @macdaddytheladyface, on Twitter @MacdaddyFace, and her blog, Living With Teal, at www.livingwithteal.com.