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Eye Donation Program

Donate Your Eyes for Sight-Saving Research

Donating your eyes for choroideremia (CHM) research after your passing is a powerful and selfless gift. Eye donation helps researchers better understand disease progression and drives the development of future treatments and, ultimately, a cure.

The Choroideremia Research Foundation (CRF) partners with Eversight, a nonprofit dedicated to restoring sight and preventing blindness through donation, transplantation, and research. Through this collaboration:

  • Who can donate: Male CHM patients and female CHM carriers
  • Where: Michigan, Illinois, Ohio, New Jersey, and Connecticut
  • Other regions: Eye donation may also be arranged through local eye banks affiliated with the Eye Bank Association of America or Lions Club International

You can also sign up as an organ donor in your state at organdonor.gov/sign-up. Be sure to let your family know your wishes in advance, since next-of-kin approval is required.

“It is impossible to overemphasize the value of eye donations to research… While animal models and cell culture experiments help, they cannot replace the knowledge gained from studying human eyes affected by CHM. Donations from patients and carriers alike allow us to understand disease progression in ways that directly impact the future of treatment.”

Malia Edwards, PhD - Assistant Professor of Ophthalmology, John Hopkins Medicine

Key Facts About Eye Donation for CHM Research

  • Anyone can donate, regardless of age, race or medical history.
  • Most faiths view eye donation as a charitable act; if unsure, consult your religious leader
  • Eye donation does not affect open-casket funerals; eyes are typically removed during preparation or cremation
  • For research use, eyes must be recovered within 8-12 hours after death to ensure visibility

Steps to Become a CHM Eye Donor 

  1. Inform your family of your decision
  2. Contact CRF to express interest and complete the CHM Eye Donation Consent Form and Eye Donor Wallet Cards
  3. Upon passing, your family must notify both CRF (info@curechm.org or 800-210-0233) and your nearest eye bank immediately, which can be found at Eye Bank Association of America and through Lions Clubs International.

    4. NOTE: Simply signing the organ donor box on your driver’s license is not enough. CHM research donation requires working directly with CRF and Eversight or your local eye bank.

    By choosing eye donation, you leave a lasting legacy — bringing hope to the CHM community today and for future generations.