Episode 14: Family Stories
Having a child with SCN2A can have a significant impact on the whole family. To mark International SCN2A Awareness Day on February 24th we interviewed three parents about having a child with SCN2A.
Hosted by Kris Pierce and David Cunnington, parents of Will, who has SCN2A.
Audio Timeline / Chapters:
- 00:00 – 00:47 Introduction
- 00:47 – 22:02 Angie
- 22:02 – 35:27 Nicolas
- 35:27 – 46:52 Kris
- 46:52 – 48:29 Summary
Angie Auldrigde is a mother of 3 children, Mark, Jillian and Luke. Angie writes a blog called Mighty and the Bean which provides great insights to the ups and downs of having a child with special needs. Angie has an innate ability to write what we are all thinking and feeling in a very eloquent way.
Nicolas Lorente is the father of Erik, who has SCN2A. Nicolas is passionate about ensuring that future treatments for SCN2A are available to families in Europe. This passion led Nicolas to found SCN2A Europe and moderate a Facebook group for European families affected by SCN2A.
Ms Kris Pierce RN MHSc MWellness, is a rare disease advocate and mother to Will who has SCN2A. Kris has held a range of board, project management, advocate and consumer representative roles and has been instrumental in working with local, state and federal governments to secure funding for multi-million dollar projects. Kris is highly skilled in building teams to work together collaboratively and is a co-founder of Genetic Epilepsy Team Australia (GETA) and SCN2A Australia, and a RARE Global Advocacy Leadership Council member.