Katie is an international family and child advocate for those impacted by Noonan Syndrome. Katie touches on her experience of growing up with a rare disease and how that has inspired her to help families navigate a rare diagnosis. Katie answers questions from members of the Noonan Syndrome Facebook group and we chat a bit about the responsibility that comes with sharing our story in hopes of helping others.

One day, Katie decided to do a hashtag search for her rare condition. Expecting to find only a few posts about her disease, Katie was surprised to find an entire community of caregivers sharing their experiences.

In hopes of providing parents with a new outlook on their child’s condition, Katie began to share her adult perspective of growing up with Noonan Syndrome. Fast forward two years later, and she is helping families from all over the world. 

Katie is now an international family and child advocate for those impacted by Noonan Syndrome. Katie touches on her experience of growing up with a rare disease and how that has inspired her to help families navigate a rare diagnosis. Katie answers questions from members of the Noonan Syndrome Facebook group, and we chat a bit about the responsibility that comes with sharing our story in hopes of helping others.

Transcription and Merch can be found at www.atypicaltruth.org

Into and Outro Music by Amiina

Episode Cover Art by Eric McJilton