Parent Advisory Board
At the heart of our foundation are the families we serve. Our Parent Advisory Board is composed of parents who understand firsthand the challenges of raising a child with PPP3CA. By sharing lived experiences and unmet needs, they help ensure our research investments, family resources, and advocacy efforts are meaningful, relevant, and impactful.
Maria
Maria is from Ireland and lives with her husband Paul and their three boys — Ruairí, Cormac, and baby Eoin, who was born in June 2024.
With a background in Psychology and a Master's in Health Psychology, Maria has spent much of her career working in HR. She is now exploring opportunities that allow her to lean more into her creative passions.
Maria is also a passionate advocate for PPP3CA awareness. Through her journey with her son Eoin, she holds onto hope — hope for greater understanding, support, and ultimately a cure for PPP3CA for her son and the wider community.
Maria has a deep love for creativity. She enjoys arts and crafts, baking, and learning new creative skills.
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What Jared wants every PPP3CA parent to know: Your child is more than any diagnosis. The beginning may feel overwhelming, but every child and family writes their own story. Milestones will come in time — trust your instincts and keep going.
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Favorite quote: "Be the change that you wish to see in the world." — Mahatma Gandhi
Karol
Karol lives in Poland with his life partner Ewa, their two wonderful daughters, and a Boston terrier. Professionally, Karol works as a marketing director at a gaming company, where he is responsible for shaping communication strategies, and building communities around games. In his free time, Karol enjoys staying active. He is passionate about mountain biking and exploring forest trails, and he regularly plays padel, enjoying both the competition and social aspect of the sport.
What Karol wants every PPP3CA parent to know:
You didn’t end up on this path by accident. Our journeys crossed for a reason — and together, we will walk this road and overcome every challenge.
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Favorite quote: "Don't Stop Believin'" - Journey
Emma
Emma lives with her husband, Connor and their two children, Aoife and Orlaith. Emma studied Psychology and Cognitive Neuroscience at university before becoming the Head of Science at a local secondary school. She is passionate to educate communities to raise awareness and increase accessibility for children with rare diseases such as PPP3CA. In her spare time she enjoys learning photography.
What Emma wants every PPP3CA parent to know:
This journey is tough and it redefines life. But you aren't alone; there is a whole community of support waiting here for you, when you are ready.
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Favorite quote:
“Find the smallest things and make them big.” — Amsterdam
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Kaitlyn
Kaitlyn is a dedicated wife and mother, living in Cleveland, Ohio with her husband, Justin, and their son, Teagan. With a Master’s degree in Anatomy and a background in the medical field, she brings both knowledge and compassion to everything she does. Passionate about advocacy, Kaitlyn is committed to raising awareness of PPP3CA and supporting families as they navigate the complexities of the healthcare system.
What Kaitlyn wants every PPP3CA parent to know:
Parents should remember that they are their child’s strongest advocate. You are the voice they haven’t yet found, the strength they lean on, and the protector they depend on every step of the way.
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Favorite quote:
Don’t pray for an easy life, pray for the strength to endure a difficult one.