Foundation for Ichthyosis and Related Skin Types (FIRST)
Community Spotlight is back with new episodes and we’re proud to be shining a light on the Foundation for Ichthyosis and Related Skin Types, more commonly known as FIRST! This incredible organization has been supporting patients, families, and caregivers, as well as funding research for more than 40 years. Listen to Chief Executive Officer, Chris Boynton as he shares his journey into rare disease advocacy, and highlights ways both patients, families, and investigators can become involved.
In part two, you’ll hear from the Cina Family as they discuss the important role patient advocacy organizations play in supporting families. Sean and Jolie Cina have two children with ichthyosis – Portia (16) and Miles (12), and found FIRST shortly after Portia was born and diagnosed. Now, 16 years later, the family is more involved than ever with the FIRST community. Inspired by her own condition, Portia created and produced a documentary about living with ichthyosis, called Beneath the Skin (you can watch this and other related videos on Portia’s YouTube Channel here).