Give the Gift of Sight—Join Vision of Children in the Quest to Cure Genetic Blindness
The Vision of Children Foundation (VOC) funds groundbreaking research around the world in its quest to find a cure for genetically caused eye disorders and to improve the lives of visually impaired individuals and their families. Beautiful Christian Life recently had the opportunity to meet with Vivian Hardage, cofounder with her husband Sam, of Vision of Children.
Vivian, what inspired you and Sam to start the Vision of Children Foundation, and what is the main goal of the organization?
We started the Vision of Children Foundation in 1991 because our son Chase was diagnosed at the age of two months old with a genetic vision disorder called Ocular Albinism Type 1 Syndrome, for which—we were to learn—there was no treatment or cure. Ultimately, we discovered there was no research taking place. Sam and I felt God had decided that this was going to be our mission—to try to find a cure. So, we started the Vision of Children Foundation with the ultimate goal of discovering a cure for genetic vision disorders and blindness in children.
What are some of the main avenues Vision of Children is pursuing to end genetic blindness?
We primarily fund research. In the beginning, we found a team in Houston, Texas, that was working out of Baylor College of Medicine. The researchers were doing very basic biological research about different genes that affected vision disorders. They were willing to take on more extensive research with our funding, so that's how we got started.
What are some of the advances that Vision of Children has helped fuel so far?
Well, specifically related to our son's disorder, our scientists have found the gene that causes his disorder. Initially, we thought there was only one gene responsible, until just this past year. Our scientists at the UCLA Stein Eye Institute found a second gene that is sometimes involved with the same condition. They discovered that 30 percent of the kids who had the same disorder didn’t have the same gene as a defect, but rather a second gene that affected them in the same way. So now there are two genes that we know of that cause ocular albinism.
There is a DNA diagnostic test available now, which is also credited to our researchers, for a mother who wants to know if she carries the defective gene. If the gene is in her family line, a female has a 50 percent chance of being a carrier of the defective gene. So, in the same family you might have one sister who has the gene and another who doesn't. The DNA diagnostic test is very helpful in determining if you're a carrier of the gene. This blood test is also helpful if you have a vision disorder and your ophthalmologist is not able to identify the specific disorder for some reason.
In what other ways are researchers applying their findings?
Currently, researchers at the UCLA Stein Eye Institute are using mouse models in their work with pluripotent stem cells to see if they can replace the defective gene by adding a corrected gene into that cellular structure and to correct the defective gene. The field of gene editing research is very promising for a multitude of different disease areas where they can take someone's own skin cells (in our son’s case, from skin on his arm) and develop what they call a pluripotent stem cell that can potentially be transformed into any cell in the body.
Then they use a new editing technology called CRISPR/Cas9 to actually go into the structure of the cell, snip out the bad gene, and replace it with the corrected gene.
Do researchers just have to go into one cell?
Theoretically, yes. The research that is going on is very exciting, and we're getting closer to a cure all the time. We know now that this disorder has to be fixed at the genetic level. Surgery doesn't help. Glasses don't help. There's really no other way to correct it other than to correct the gene. We are on the horizon of being able to cure a whole host of genetic disorders, and the same CRISPR-CAS9 technology is being used in experiments with a lot of genetic diseases like Alzheimer's and Parkinson's, where genes are the cause of debilitating diseases.
What particular struggle has Vision of Children fought to overcome?
In the early years, identifying the researchers who had the capability, the knowledge, and the interest in moving this mission forward was one big obstacle we faced. As I mentioned, when we started out twenty-six years ago, there was nobody doing any research on this. Funding is always an obstacle as well; the research follows the money. Without money, there's no research. Every researcher and scientist has to make a living. Every institution where most of the research takes place has to pay the bills.
What special memory do you have from the last twenty-six years with Vision of Children?
We have had the spectacular opportunity to do a number of fundraisers with Andrea Bocelli, the opera singer. He has helped us raise significant amounts of funding through six different events of his in three different cities over the years. Of course, Andrea is blind from a genetic vision disorder. He is a wonderful man who has really embraced the cause of Vision of Children. When he was just emerging as a huge performing artist in the world, we were lucky enough to make a connection through someone we knew.
One year we had an opportunity to have a concert with Andrea at the same time and place that one of our world symposiums for our scientists was taking place. As a part of the symposium, we took our scientists out on a bay cruise one night, and Andrea actually asked if he could join us and our scientists. We had a number of scientists from Italy with us then who had been researching for us for a while, and it was so exciting for them. The Italian scientists and Andre got to meet, and they were speaking in Italian and talking about all kinds of research they were doing. Andrea asked, "Do you suppose that one day I might be able to see again?" It was very touching. And the answer is, yes, we hope so. All he has been doing to help us and help other people may actually be to his benefit one day also. (Note: The Vision of Children Foundation has just scheduled another exciting concert event with Andrea Bocelli for June 21, 2018, in San Diego. For more details, click here.)
How can people support Vision of Children?
People can visit our website www.visionofchildren.org and learn more about the research we are doing and ways to donate. We also provide support services for families who have a child or family member who is affected with any kind of genetic blindness or vision disorder. We've done programs where we furnish vision aids to help children who are visually impaired in their school work. We also connect them with different medical professionals around the country so that they can have the best medical diagnosis available.
We are also partnering with Illumina, a local company that does gene sequencing and DNA analysis. Illumina is furnishing free diagnostic DNA testing for families with difficult-to-diagnose vision disorders. (Note: To learn more about Illumina’s free diagnostic vision disorder testing, please contact Nancy Montejano at firstname.lastname@example.org.)
Thank you, Vivian, for taking the time to share with the readers of Beautiful Christian Life about the work you, Sam, and the entire Vision of Children Foundation team are doing to end genetic blindness.
Thank you. We want to find a cure and go out of business. This is our mission.
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