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Goodwill Participates in International CRF Conference

Jun 20, 2022

Goodwill's Vision Services staff participated in the International CRF Conference that was held in Rochester on June 15 - 18 at Woodcliff Hotel & Spa

Picture of the CRF banner and the Welcome/Registration table for the conference
Picture taken during one of the presentations at the CRF Conference. In the front of the room, the speaker is standing beside a screen depicting a cell, chromosome, gene, and protein. He is describing what causes CHM.

This past week, Rochester hosted the International Choroideremia Research Foundation (CRF) Conference - CRF members and those affected by Choroideremia came from all over the world to attend. 

The Choroideremia Research Foundation (CRF) was founded in 2000 to raise money for scientific research for a cure and treatment of Choroideremia (CHM), a rare genetic disorder that causes progressive vision loss that may lead to complete blindness. CHM is caused by a defect in the CHM gene that lives in the X chromosome. This defect affects the body's ability to produce a protein that is essential for cells in the retina to function. Symptoms of CHM include night blindness, loss of peripheral vision, glare sensitivity, color and depth perception loss, and can result in complete blindness (Home - CureCHM). 

Goodwill's Vision Rehabilitation Program Director, Margie, giving the Sensitivity to Blindness Training. She is standing at a podium beside a large screen with the training presentation.

In preparation for the CRF Conference, Goodwill Vision staff held a Sensitivity to Blindness Training at the Hyatt Regency Rochester. There, hotel staff in the Rochester area learned about how to best approach a person with low vision or blindness, how to guide someone through a space verbally or by acting as a human guide, and how to describe visual information. Goodwill provides free Sensitivity to Blindness Training upon request; however, because of the increase in demand for these trainings, we happily accept donations made out to Goodwill Vision Enterprises so that we may continue to keep up with demand and still provide excellent Vision Wellness and Rehabilitation Services.

During the CRF Conference, our Vision Wellness Coordinator Philip Monte Verde led a support workshop for those affected by CHM. Additionally, Goodwill Vision Rehabilitation Program Director Marjon (Margie) VandeZande and Director of Workforce Development JoBeth Rath had a table where they educated attendees about Goodwill's Vision Services and the importance of early intervention for those affected by vision loss. "Some people here know that they have CHM, but haven't lost their vision yet," said Margie of the attendees that visited our table, "we referred these individuals to their local agencies for the blind so that they can receive early intervention services." Margie explained that teaching people adaptive skills before they lose their vision makes it easier for them in the long run. For individuals with CHM, practicing adaptive skills and knowing how to use assistive technology is something that should be started upon diagnosis.

One person that visited Goodwill's table during the conference was a farmer from Kansas with CHM. Margie and JoBeth were able to talk to him about what services and benefits he qualified for, and connected him to the National AgrAbility Project, an organization that partners with Goodwill whose vision is to "enhance quality of life for farmers, ranchers, and other agricultural workers with disabilities" (National AgrAbility Project). They also showed him assistive technology that helps with low vision, like an electronic magnifier that would allow him to work on fixing his farming equipment. 

From left, JoBeth Rath and Margie VandeZande at the Goodwill table at CRF Conference. Set up on the table are various assistive technologies to be demonstrated to conference attendees.

We were so happy for the opportunity to table and be a part of this event! To learn more about Goodwill Vision Services, click here.