Board of Directors

Jared lives in New York with his wife Andrea, daughter Penelope, and their son Griffin.  Jared has an irreverent sense of humor and is obsessed with finding a treatment that will improve the quality of his baby's life.

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What Jared wants every PPP3CA parent to know: Through this adversity, you will find strength you did not know you had.

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Favorite quote: "Everyone has a plan until they get punched in the mouth." - Mike Tyson

Larisa lives in Massachusetts with her husband, two children, Lena and Oliver, and a very energetic Golden Retriever.  Larisa works at a Boston biotech, where she designs and leads clinical trials.  She is passionate and driven in using her professional knowledge to find treatment options for patients with PPP3CA.  Larisa enjoys cooking, traveling, skiing, beach walks, boat rides and spending time and creating memories with her family.
 

What Larisa wants every PPP3CA parent to know: Life will look different than you once imagined, and it's okay to grieve that loss. It may not feel like it right now, but you will find joy again. Don't lose hope. 

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Favorite quote: "I see your pain, and it's big.  I also see your courage, and it's bigger." - Glennon Doyle

Blaire lives with her husband, Thomas, and 3 kids: Penny, Sloane and Frank, in Wichita Kansas. She has worked as a Licensed Clinical Social Worker for 12 years, with a majority of her career focused on Care Management and navigating complex health systems. Outside of working full time, she enjoys spending time with her family, riding horses, watching garbage TV, seeing live music, and bringing people together!

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What Blaire wants every PPP3CA parent to know: Just focus on the moment, when it gets too overwhelming. You will find a new normal. You are far more resilient and adaptable than you realize. 

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Favorite quote: "When nothing is certain, anything is possible"

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Jacci (pronounced "Jackie") lives in Kansas with her husband, Collin, and their three children: Cameron, Carter, and Claire.  She enjoys reading across all genres, cheering on baseball games (Go Royals!), indulging in sweet treats and coffee, and taking memorable trips with her family.   Jacci is deeply dedicated to raising awareness, building community, and advocating for research to improve the life of her daughter and peers with PPP3CA.
 

What Jacci wants every PPP3CA parent to know: Seek second opinions and surround your child with a team you truly trust. Advocate confidently—no one knows your child better than you. You are not alone—lean on this community, ask questions, and trust your instincts.
 

Favorite quote: "Change will not come if we wait for some other person or some other time.  We are the ones we've been waiting for.  We are the change that we seek." - Barack Obama