03-05-24 Changing the Narrative Around Trisomy 18
Born Abel’s 8th book, “The Soft Landing” was dedicated to SOFT organization, which has been supporting Trisomy families for over 40 years. The book features over 60 children with Trisomy 9, 13 and 18. Today we chat with board members of SOFT and the president of Born Abel, Amanda Gust. We’ll be talking about the controversy surrounding Trisomy 18 recently in the news and how SOFT is changing the narrative around the Trisomy 18 diagnosis.
Guest Bios:
Amanda Gust
Amanda is the co-founder and President of Born Abel, a non-profit dedicated to proclaiming the worth & value of babies and children with complex medical conditions through the inclusive children’s series Born Abel. Amanda and her husband John have five beautiful children and when she’s not busy fighting to change the world, she’s likely to be the loudest mom on the bleachers at their hockey, soccer or softball games.
Barb VanHerreweghe
President SOFT
Barb and Dave VanHerreweghe are parents of two. Their daughter Stacy, was the second oldest living child with Trisomy 18 living in the United States and survived to almost 37 years old. Barb has made it her career to fight for the rights of medically fragile children and their families. She has been President of SOFT for over 30 years.
Kris Holladay
Founding Parent SOFT
Board of Directors
Kris and Hal Holladay are parents of six wonderful children. Their second child, Kari Deann, was born with trisomy 18. She lived lovingly & beautifully for 10 years. They are the founding parents of SOFT (1981). They have been continually involved with SOFT as permanent board members and serve on various committees. They are dedicated to supporting families on their trisomy journey.
Video Version: https://www.youtube.com/live/7Rtmx0UJNTU?si=uvLXa906PowImOcK
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https://www.webebookspublishing.com
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