Parents Inspire at Fall 2023 Learning Session
Over the two days of the Fall Learning Session, parents played a big role in sharing their stories, the work of the Parent Working Group and engaging in discussions.
A founding PR-COIN Parent Advocate, Angela Young (read her son’s story here) of Cincinnati Children’s will be stepping down as her JIA child transitions to adult care. Angela received the inaugural Nancy Griffin Award for her important contributions to JIA patients and families through her work with PR-COIN, including as the first parent involved, she began recruitment of other parents into the network. Angela contributed abundantly to parent engagement in PR-COIN and research projects, to development of Shared Decision-Making cards, Helping Hands Handbook, and inspirational videos. She has been a tireless political advocate for pediatric rheumatology and we are so grateful for her.
We also heard uplifting messages from Parent Advocates Heidi Barrett of Seattle Children’s and Laura Bouslaugh of Children’s Mercy – Kansas City (read her daughter’s story here), inspiring us to continue in our work to improve care and outcomes for patients and their families. Heidi shared about the multiple family members including herself, who have dealt with arthritis.
Laura spoke from the perspective of having JA herself while parenting a child with the diagnosis. Her daughter has been on Humira for 6 years and graduated from college. Laura volunteers her time with PR-COIN and her husband and daughter are helping with a PR-COIN project. She strongly urges parents to get involved and for providers to seek the input of parents.
“The struggle can be turned into opportunity to learn, share, grow and leave a legacy for other patients,” she said. “The unique relations of providers, parent and patients in learning networks is an amazing example of collaboration for the greater good.”
We are so grateful to Angela, Heidi, Laura, and all our wonderful PR-COIN Parent advocates – thank you for generously sharing your time, skillsets, and stories with us!