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PARALLEL JOURNEYS

Thanks to the FDA-approved treatment lonafarnib, those with Progeria are living longer and healthier lives, while PRF explores other drugs and genetic therapies that may help even more. They are traveling the world, attending college, and planning their futures – a reflection of how far we’ve come together in the fight against Progeria.

We are excited to feature one such young adult whose qualities mirror the story of The Progeria Research Foundation itself. Driven by determination and focus, Lindsay’s and PRF’s journeys are filled with extraordinary accomplishments and hope for the future – powerful reminders of the life-changing impact your support makes POSSIBLE.

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THE PARENTS’ PERSPECTIVE

“ Her heart is what makes her so special. ”

Kristy and Joe’s 21-year-old daughter Lindsay, was diagnosed with Progeria at age 3.

Kristy says, “Lindsay was always her own toughest critic. She didn’t just try her best, she expected the best from herself. That drive, that determination—it’s just who she is.”

“And she’s everyone’s biggest cheerleader. Her heart is what makes her so special,” Joe says with pride.

“ PRF is family. ”

Kristy and Joe’s journey to help their daughter started with PRF guiding them to researchers at the National Institutes of Health, the trial team at Boston Children’s Hospital, and PRF’s many resources. They were struck by something powerful: “They didn’t treat Lindsay like a patient or dismiss our concerns, they treated us like family. PRF is family.”

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FROM DIAGNOSIS TO DREAMS

Lindsay began coming to Boston for the PRF-funded clinical trials when she was just 3 years old!

Today, Lindsay is thriving at Albion College. Now a junior, she’s double majoring in English and Political Science, Vice President of her sorority, and a fierce advocate for people with disabilities. She’s an honor student, award-winning writer and scholar, and is working on a thesis that explores the use of poetry to express disability in medical and social contexts.

Her dream? To work in publishing, helping people bring their words into the world. Lindsay knows that because of PRF’s support and the breakthroughs in treatment and research, that dream is within reach.

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Lindsay embodies the same drive, compassion, and leadership that define The Progeria Research Foundation.

PRF is driving every major discovery, compassionately ensuring those with Progeria get the unique care they need, and leading the charge to the cure.

Fueled by purpose and driven by results, PRF is a leader in rare disease research with its focus, innovation, and measurable impact. But we’re not finished. Lindsay’s future – and the future of every child with Progeria – depends on what we do next. We must continue to fund drug and gene therapy development – For the Children ♥ For the Cure.

Please join us and be ONE to make a cure – and many more stories like Lindsay’s – POSSIBLE.

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Meet the 2025 PRF ONEpossible Teams

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TEAM KAYLEE

[/et_pb_text][et_pb_text admin_label=”TEAM ZOEY” _builder_version=”4.27.4″ _module_preset=”default” link_option_url=”https://fundraise.givesmart.com/vf/Progeria/team/Zoey” global_colors_info=”{}”]

TEAM ZOEY

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TEAM LINDSAY

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TEAM PRF

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TEAM NATHAN & BENNETT

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