Once Upon A Blue Moon

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!