Pay It Forward: Stories from CZI's Rare As One Project
Fri Feb 06 2026
Both of this week’s stories come from Chan Zuckerberg Initiative’s Rare As One Project grantees, who share their deeply personal experiences with rare diseases and illustrate how research is so essential in the search for better treatments and cures.
(For more stories like these, you can also check out our previous episode The Story Collider produced with Rare As One in 2019, 2021, 2023, and 2024, as well as our Rare Disease playlist.)
Part 1: After multiple relapses, Carlos Guerrero-Anderson takes a chance on an experimental treatment for his rare cancer.
Part 2: Angie Weaver holds onto an unshakable belief that her daughter, who has a rare SCN2A disorder, will beat the odds.
Carlos Guerrero-Anderson is an executive leader and patient advocate committed to amplifying the voices of Hairy Cell Leukemia and rare disease communities. Diagnosed with a rare blood cancer at age 25, Carlos transformed his personal journey into a lifelong mission to advance equity and create inclusive spaces for patients and families. He currently serves as the Director of Multicultural Engagement & Insights at the Hairy Cell Leukemia Foundation, supporting patients through education, outreach to underrepresented communities, data analysis, program promotion, and the sharing of diverse patient stories. With over 20 years of experience in healthcare insights and data-driven communications, Carlos combines strategic expertise with a lived perspective to create and lead culturally responsive programs that strengthen trust, amplify patient voices, and deliver measurable impact across diverse communities. He is an active member of several national patient advocacy groups, and his work has been featured at national conferences, most recently at the NORD Rare Disease Summit 2025. Carlos believes that storytelling is one of the most powerful tools for breaking barriers, building trust, and ensuring that no patient has to fight alone.
Angie Weaver is the Director of Philanthropy and Development for the FamilieSCN2A Foundation, whose mission is to accelerate research, build community, and advocate to improve the lives of those affected by SCN2A-related disorders around the world. After her daughter Amelia was diagnosed with SCN2A, Angie became a passionate advocate for rare disease families—sharing her story to advance research, policy change, and awareness. She lives in northern Minnesota with her husband, Josh, and their youngest daughter, Penelope.
See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
More
Both of this week’s stories come from Chan Zuckerberg Initiative’s Rare As One Project grantees, who share their deeply personal experiences with rare diseases and illustrate how research is so essential in the search for better treatments and cures. (For more stories like these, you can also check out our previous episode The Story Collider produced with Rare As One in 2019, 2021, 2023, and 2024, as well as our Rare Disease playlist.) Part 1: After multiple relapses, Carlos Guerrero-Anderson takes a chance on an experimental treatment for his rare cancer. Part 2: Angie Weaver holds onto an unshakable belief that her daughter, who has a rare SCN2A disorder, will beat the odds. Carlos Guerrero-Anderson is an executive leader and patient advocate committed to amplifying the voices of Hairy Cell Leukemia and rare disease communities. Diagnosed with a rare blood cancer at age 25, Carlos transformed his personal journey into a lifelong mission to advance equity and create inclusive spaces for patients and families. He currently serves as the Director of Multicultural Engagement & Insights at the Hairy Cell Leukemia Foundation, supporting patients through education, outreach to underrepresented communities, data analysis, program promotion, and the sharing of diverse patient stories. With over 20 years of experience in healthcare insights and data-driven communications, Carlos combines strategic expertise with a lived perspective to create and lead culturally responsive programs that strengthen trust, amplify patient voices, and deliver measurable impact across diverse communities. He is an active member of several national patient advocacy groups, and his work has been featured at national conferences, most recently at the NORD Rare Disease Summit 2025. Carlos believes that storytelling is one of the most powerful tools for breaking barriers, building trust, and ensuring that no patient has to fight alone. Angie Weaver is the Director of Philanthropy and Development for the FamilieSCN2A Foundation, whose mission is to accelerate research, build community, and advocate to improve the lives of those affected by SCN2A-related disorders around the world. After her daughter Amelia was diagnosed with SCN2A, Angie became a passionate advocate for rare disease families—sharing her story to advance research, policy change, and awareness. She lives in northern Minnesota with her husband, Josh, and their youngest daughter, Penelope. See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.