From Ianice Viel, Patient Advocate and Social Media Manager
Nico’s Lunchbox Book: The US HAEA Engagement team continues to work hard to make sure our youngest patients receive support in a way that keeps them engaged and entertained. This year, the US HAEA chapter teamed up with children’s author Caryn Sonberg Seiler to develop a three-book series to help kids learn about HAE in a relatable way. The first book, scheduled to be released this fall, is as an introduction to dealing with the condition for kids with HAE or their siblings. The book offers quick definitions for tougher words, giving kids a valuable tool to better understand HAE.
October Youth Advocacy Month #BeyondHAE: We are excited to celebrate the second annual HAE Youth Advocacy month. In celebration, the US HAEA launched #BeyondHAE, a social media awareness campaign where young advocates share pictures and testimonials of what their lives are like beyond HAE. The campaign aims to highlight the tenacity and courage of our youth advocate while raising awareness and motiving new youth advocates.
HAE In-Motion Fall 2019 Events: This year, the US HAEA has celebrated four exciting HAE In-Motion events in the cities of Wheaton, Atlanta, Memphis, and Fairfax. These events allow patients, caregivers, friends, families, and the HAE community to come together, share stories, and support one another. We will wrap up the excitement-filled 2019 HAE In-Motion series with two incredible upcoming events in the cities of Portland and Providence. These fun family events help raise awareness within local communities, and generate funds for our HAEA patient support programs: the Pam King HAEA Scholarship Program, the Chris Whalen Compassion Fund, and the HAE Research for a Cure.
