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February 10, 2022

Research Fuels Change: One Family’s Motivation to Participate

Becky Ronan has seen firsthand how research has impacted life for people with Down syndrome. When her older brother Kevin was born with Down syndrome in 1967, her parents were advised not to bring him home.

“Most people with Down syndrome were put in institutions,” Becky says. “Kevin ended up being cared for by a great foster family. But our relationship felt more like cousins, not siblings.”

Things are very different for Becky’s daughter Frannie, who was born with Down syndrome in 2009: Frannie lives at home and has a close relationship with her sister Bella. 

“But there’s still bias and misunderstanding. And there’s still a lot we don’t know in terms of their healthcare,” Becky says.

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That’s why the Ronans were excited when Frannie’s doctor, Virginia Mason’s Rebecca Partridge, MD, invited them to get involved in research led by BRI’s Bernard Khor, MD, PhD. The study aims to understand if having Down syndrome impacts response to the COVID-19 vaccine.

“Some data suggests that people with Down syndrome don’t produce as strong of a response,” Dr. Khor says. “This study will help us learn more about that and open the door to ways to spark a more effective response.”

Becky knows Frannie isn’t afraid of blood draws, so she asked her if she wanted to join the study, which required three blood draws and two shots.

“That was no big deal for me,” Frannie says.

Frannie’s eagerness to participate was more practical: She knew she needed the vaccine for favorite activities like going to Seattle Sounders games, playing basketball and doing gymnastics with the Special Olympics. So she got her first blood draw just before her 12th birthday and her first vaccine dose shortly after. She said participating in research was easy, especially because she got a teddy bear and apple juice. Frannie and her family are happy to do anything they can to improve the lives of people with Down syndrome.

“We want Frannie and everyone with Down syndrome to have the best possible healthcare,” Becky says. “When Kevin was born, they told my parents he’d live to 8 years old. And he just celebrated his 54th birthday. That change comes from research, from education. So we’re happy to play any small part. We’re grateful for BRI’s work and excited to be involved.”

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