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!!
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!
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.
Listen now to our new episode featuring our first ever Rare Star of the Week: Gary M. Johnson! Join Cayla Xue, Shaping Foundation's co-founder and secretary, as she dives into Gary's journey with SCA2. Learn about Gary's personal struggles and how he overcame them as he was faced with his diagnosis of spinocereberal ataxia 2 (SCA2) and eventually found a community he felt that he truly belonged in.
Tune into this episode to learn more about research of rare diseases! Join Liesha Yenduri, Shaping Foundation's co-founder and co-president, as she discusses how research on rare diseases works, organizations supporting research, and the challenges faced by the rare community in terms of research.
Our first official episode will introduce rare diseases and explore the importance of learning and spreading awarness for these diseases. Shaping Foundation's co-president, Pooja Shah, will be hosting this episode and begin our weekly discussions about the challenges of the rare disease community and what we can all do to help make a difference.
Thanks for listening to our introductory podcast! Support those with rare diseases and our cause by staying tuned to this podcast, following us @shapingfoundations on twitter, instagram, and facebook, or finding us at www.shapingfoundations.wixsite.com/shapingfoundations!