Donate Your Eyes for Sight-Saving Research!
As an eye donor, gifting your eyes for choroideremia (CHM) research after your death is a heroic act. By studying this donated tissue, researchers will study disease pathology and strive to develop new treatments and a cure for CHM.
To facilitate this effort, the Choroideremia Research Foundation has initiated a new collaboration with Eversight, a nonprofit organization whose mission is to restore sight and prevent blindness through the healing power of donation, transplantation, and research. Via Eversight, male CHM patients and female CHM carriers can donate their eyes for research in the states of MI, IL, OH, NJ and CT. Eye donation in other states may be arranged through local eye banks that are members of the Eye Bank Association of America. Together, we can deliver retinas affected by CHM to the researchers who need them, such as Malia Edwards, PhD, Assistant Professor of Ophthalmology at Johns Hopkins Medicine in Baltimore, Maryland.
Dr. Edwards states, “It is impossible to overemphasize the value of eye donations to research. While animal models and cell culture experiments can help us understand choroideremia, these do not compare to the knowledge we gain by investigating eyes from CHM patients. Eye donations allow scientists to study changes to individual cells and types of cells, helping us understand why vision is lost. Donations from carriers are particularly crucial because the milder vision changes they may experience will help explain disease progression of CHM even more than looking at the late stage of the disease in eyes from CHM patients. Through eye donation, all those affected by CHM can help us understand this devastating disease which will lead to improved treatment and impact the lives of future patients.”
Eyes can be donated for CHM research regardless of age, race, or medical history. Some people wonder if their religion is opposed to eye donation. Rest assured that most faiths support these donations as the ultimate act of charity. It is also important to remember that eyes are typically removed and disposed of by funeral homes for open-casket funerals and of course lost when cremation is chosen. Check with your minister, pastor, rabbi, imam, or other religious leaders if you have questions.
There are several steps you will need to take if you wish to donate your eyes for CHM research:
1. Once an individual decides they would like to donate their eyes for CHM research, they should notify their family of their wishes.
2. The donor should contact CRF to let them know they are interested in donating their eyes and complete both the CHM Eye Donation Consent Form and the CHM Eye Donor Wallet Cards.
3. Upon the donor’s passing, family should notify both CRF at email@example.com and their nearest Eye Bank, which can be found at https://restoresight.org/who-we-are/find-an-eye-bank/
Please note that donating your eyes for CHM research cannot be accomplished simply by signing the organ donor information portion of your driver’s license. Eye donation for CHM research is a separate process that can only be accomplished by working with CRF and Eversight or your local eye bank.
To learn more about becoming a CHM eye donor, contact Eversight at 866-898-4391 and they can further explain how you can make your eye donation wishes known.
By becoming a choroideremia eye donor, you can be proud knowing you are helping to improve the quality of life for all CHMers now and in the future.