Yulee Family Launches 'A Cure for Carson' Charity to Fight Rare Cystinosis Diagnosis

After months of seeking answers, parents turn their toddler's rare disease into a mission for awareness and research funding.

Apr. 11, 2026 at 5:41am

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An extreme close-up X-ray image revealing the intricate structure of a human kidney, conceptually representing the rare genetic disorder cystinosis that affects the kidneys.A rare genetic disorder affecting the kidneys inspires a Florida family to launch a charity and raise funds for critical research.Today in Jacksonville

A Yulee, Florida family is raising awareness and funding research for their toddler son Carson's rare cystinosis diagnosis through a new charity called 'A Cure for Carson'. After months of seeking answers, the family is now hosting a charity golf tournament to support finding a cure for the genetic disorder that causes an abnormal buildup of the amino acid cystine in various organs of the body.

Why it matters

Cystinosis is an extremely rare genetic disorder, affecting only about 500 people worldwide. By sharing Carson's story and launching a dedicated charity, the family hopes to increase understanding of the disease, raise funds for critical research, and inspire others facing similar rare diagnoses to take action.

The details

Carson was diagnosed with cystinosis at 14 months old after his parents, Megan and Zach, spent months seeking answers for his symptoms. Cystinosis causes an abnormal buildup of the amino acid cystine in various organs, leading to organ damage if left untreated. The family is now hosting an annual charity golf tournament called 'A Cure for Carson' to raise awareness and funds for cystinosis research.

  • Carson was diagnosed with cystinosis at 14 months old.
  • The family is hosting the first 'A Cure for Carson' charity golf tournament this year.

The players

Carson

A toddler from Yulee, Florida who was diagnosed with the rare genetic disorder cystinosis at 14 months old.

Megan and Zach

Carson's parents, who are launching the 'A Cure for Carson' charity to raise awareness and funding for cystinosis research.

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What they’re saying

“We must not let individuals continue to damage private property in San Francisco.”

— Robert Jenkins, San Francisco resident

“Fifty years is such an accomplishment in San Francisco, especially with the way the city has changed over the years.”

— Gordon Edgar, grocery employee

The takeaway

By sharing Carson's story and launching the 'A Cure for Carson' charity, this Yulee family is turning their toddler's rare diagnosis into a mission to raise awareness, fund critical research, and inspire others facing similar challenges to take action and make a difference.