"It gives our patients and our team a sense of being a part of something much bigger than our little practice. We are contributing to the future of our kids and that increases morale of the staff and perception of our patients. Who doesn’t want to know that what they just spent is also helping others?" - Dr. Jason Tu on being a part of VOC's Optometric Partner Program
"Stay positive. It’s a challenge sometimes, but it is what makes you unique! Embrace life and take nothing for granted."
Considering LASIK for yourself or a loved one?
We are excited to announce our new partnership with Gordon Schanzlin New Vision Institute! From now until May 31, Gordon Schanzlin will make a donation to Vision of Children for every LASIK patient referred by an Optometrist!
Contact your local Optometrist today to learn more and help Vision of Children fund research to find cures!
Hadid Eyewear Commits to Supporting The Vision of Children Foundation
We are thrilled to have been selected as the charity partner of Hadid Eyewear, a new sunglass manufacturer launched by Alana and Mohamed Hadid. Hadid Eyewear will donate 5 percent of net sales to The Vision of Children Foundation. The frames are currently available for sale at www.hadideyewear.com, Revolve, Shopbop and RonRobinson. Additional retailers will be announced in the near future.
Connecting with other family members whose children live with genetic vision disorders is a priority for Sam and Vivian Hardage, founders of The Vision of Children Foundation. That is why, during a recent trip to New York City, they invited family members to join them for a reception in midtown Manhattan. About two dozen parents, grandparents and even a few adult children came together for a special evening to hear about the latest progress in research and hopes for a cure.
Sam shared with attendees the latest news on the frontier of research. Scientists are making ground-breaking advancements, including Dr. Alejandra Young’s latest discovery of a second gene that causes Ocular Albinism, which was published in September 2016. Read more about her discovery here.
After listening to Sam speak, one mother shared that she feels confident that scientists who are working with The Vision of Children Foundation will be the ones to find a cure. Her 12-year-old daughter has Oculocutaneous Albinism (OCA), an inherited vision disorder that reduces visual acuity. “She is doing well and prospering,” the mother said, “but I would love to see the day when she doesn’t have to deal with OCA.”
Sara and Bobby Sheehan, who have been longtime Family Network Members, commented on how nice it was to reconnect with other family members. Shortly afterward, they became involved in the Vision of Children’s newest Vision Hero video. The filmmakers created an inspiring and moving segment on Abigail Bean, a 10-year-old gymnast who dreams of one day participating in the Olympics. They have since volunteered to serve as media consultants for VOC.
The evening concluded with hope for the future. Many family members believe in the value of helping The Vision of Children continue its work by mentoring other families and providing financial support. We thank our long-time friends and our brand new friends for coming together to connect and share their experiences, challenges, and most importantly, the triumphs of their children, which inspire us all!
“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” – Margaret Mead
This beautiful little girl named Sandrine reminds us of why we are grateful for your support – support that connects us with families all over the world and allows us to continue our mission of finding a cure for children with genetic vision disorders. Sandrine’s grandfather wrote about her in this letter:
Last year on March 5 the most beautiful and precious child came into our lives when Sandrine Delaney-Millman was born. She is our 8th grandchild and when we knew she had all “her fingers and toes” we were so relieved. Then, about three months later, we heard two words: ocular albinism, a phrase we had never heard before. All of us were devastated by the news. For weeks we were wondering what the future would be like for her and all of us.
When our son and daughter-in-law began speaking with other families, your Foundation – with the videos prepared by young adults with this condition – helped us become calm again. We all decided to raise her as an independent person capable of doing everything she could to live the life we all wish for her.
One day, Sandrine will have a list of accomplishments like other children and young adults who live with vision disorders. They include a nine-year-old competitive gymnast, a 13-year-old musician and competitive runner, a recent college graduate who is pursuing her nursing career, a young adult who is the National Blind Golf Champion, and a 26-year-old mechanical engineer who designs airplanes for the US Navy. They are our Vision Heroes.
You can be a hero, too. With your support, we can continue to fund research for a cure.
Recent advancements in research are making it possible for our scientists to explore new opportunities in gene therapy and gene editing. Scientists are working to repair mutated DNA by using stem cells created from the patient’s own skin. This stem cell project is being conducted at UCLA Stein Eye Institute under the direction of Dr. Debora Farber and funded by The Vision of Children Foundation. This research is our most promising to date and we hope that it will culminate in a human clinical trial soon!
Now, more than ever, we need your help! Please support The Vision of Children Foundation and help us put an end to genetic vision disorders forever.
Your donation will help children like Sandrine – “whose smile lights up our lives and whose eyes see much more than anyone can imagine.”
Thank you for supporting The Vision of Children Foundation. With gratitude,
Sam and Vivian Hardage
Founders of The Vision of Children Foundation
P.S. Your gift will enable cutting edge clinical research to find a cure for children like Sandrine.
Carl Zeiss Vision, Inc. employees showed their caring spirit by selecting The Vision of Children Foundation as the non-profit beneficiary at their national sales meeting. Employees had the option to wear jeans during the weeklong meeting if they gave a donation to Vision of Children. On the last day of the conference, the Zeiss employees participated in a team building activity where they filled tote bags with toys for low vision children. The real excitement culminated after the activity when Vivian Hardage, Co-Founder of Vision of Children, made a special presentation that brought people to their feet.
Vivian shared the story of learning that her son had ocular albinism. The rare vision disorder was only identified after meeting with many pediatricians and opthlalmologists, which finally led to seeking out scientists who could begin working on a cure. “It’s a remarkable time to be working in genetic research,” she shared. “We’ve driven science to the horizon of actually restoring vision to children who cannot see,” says Vivian.
Zeiss employees shared her enthusiasm, and then Vivian introduced a video of one of our Vision Heroes. They watched the moving video of legally blind, 13-year-old Joel Gomez, who shares his passion for running competitively and playing music, without the benefit of full vision. As the clapping began to subside, Vivian shared a surprise: Joel Gomez was waiting off-stage to perform for the hundreds of people in the room. People rose to their feet again to cheer on this Vision Hero. Joel thanked the crowd and sang “Just Wanna Smile with You,” while playing his ukulele. He captured the hearts of audience members and became an instant celebrity. When the event ended, people asked Joel to sign his autograph on programs and their t-shirts.
The Vision of Children Foundation was honored to partner with Carl Zeiss Vision. Zeiss employees raised $7,000 to support the organization. Part of their fundraising included the 21 gift bags for children who are sight impaired. These bags include tactile games, books in large print, a magnifier sheet, building blocks and other items that will help families of children who have a vision disorder.
Thank you, Carl Zeiss Vision. Your enthusiasm and gift makes us so grateful and “we just wanna smile with you.”
When scientists attend scientific symposiums, they don’t typically present their “unfinished” work or interact with families directly impacted by the very diseases they are trying to cure. Yet that is exactly what happened at the 9th World Symposium on Vision Disorders hosted by The Vision of Children Foundation from November 16-18, 2016 at The Grande Colonial in La Jolla, CA.
The Symposium, called “When Vision Becomes Reality,” was hailed as a “magnificent” experience of collaboration by scientists and family members. “The interaction among scientists made this conference extremely different from others,” said Dr. Stephan Tsang, from Columbia University Medical Center in New York. “Talking with the families made it even more meaningful, giving us the inspiration to persevere.”
The top vision researchers from around the world discussed published and unpublished work. “Our main goal is to move the needle so we can improve how people see,” said Dr. Debora Farber, who is the Foundation’s Scientific Advisor and leads a team of researchers conducting groundbreaking work at UCLA Stein Eye Institute. Dr. Farber’s presentation on using byproducts of patients’ own stem cells to replace defective DNA and ultimately treat Ocular Albinism was met with much excitement. Just last month, Dr. Farber’s team announced the discovery of mutations in a second gene that can trigger this genetic vision disorder. The research, led by Dr. Alejandra Young, who also presented at the Symposium, has major implications for better diagnosis and ultimately treatment for thousands of children.
Basic science research is a critical step on the path to clinical treatment trials, Dr. Brian Brooks, from the National Eye Institute, noted in his presentation. Scientists at the Symposium experienced the marvel of seeing their work translate into actual human benefit when Dr. Arlene Drack, from the University of Iowa, showed videos of the dramatic improvements in the vision of children with Leber Congenital Amaurosis after gene therapy treatment.
“Findings like these give us hope for a day in the not-so-distant future when many other vision diseases will be curable,” said Sam Hardage, who co-founded Vision of Children with his wife, Vivian, in 1991 after their son was born with Ocular Albinism. At the time, there were no researchers studying this rare genetic vision disorder, for which there are no treatments and no cures. The Hardages were determined to encourage scientific research to find a cure for this congenital condition. Today, as it celebrates its 25th anniversary, Vision of Children is the foremost organization in the world supporting research for Ocular Albinism and related vision disorders.
Families impacted by vision disorders attended the scientific sessions and a special session that featured presentations by Dr. Greg Ostrow, Director of Pediatric Ophthalmology at Scripps Health San Diego, Dr. Rebecca Kammer, a low vision optometric specialist from Anaheim, CA, and Molly McGinniss, a genetic counselor who works for Illumina in San Diego. “Current genetic research holds terrific promise for treating vision disorders because the eye is so much more accessible, compared with other genetically caused diseases that are more systemic and impact the whole body,” McGinnis said. (Click here for more information about genetic testing.)
For a young couple from Chicago whose two-year-old daughter has Oculocutaneous Albinism, the Symposium provided an opportunity to learn from other parents’ experiences, as well as gain a better understanding of what the future holds. Another mother, who has an 18-year-old with the same condition, was surprised to learn that her daughter might be able to obtain a driver’s license. “I might not have known this had it not been for attending this Symposium,” she said.
Thank you to all the Symposium sponsors, including the Allergan Foundation, Bell Charitable Foundation, Epstein Family Foundation, Farber Family Foundation, Farrell Family Foundation, Grande Colonial La Jolla, Hornblower Cruises & Events, Isakow Family Foundation, Tamara and Roger Joseph, Marmontor Foundation, The Marine Room and San Diego Private Bank.
The quest for better understanding and finding cures for ocular albinism is closer to fruition, thanks to the recent discovery of mutations in a second gene that can trigger this genetic vision disorder. This finding has major implications for better diagnosis of this disease. With a clearer understanding of the cause of the condition, scientists can move forward with cutting-edge research to improve vision for thousands of children with ocular albinism.
The research, funded by The Vision of Children Foundation, was led by Alejandra Young, Ph.D., Assistant Project Scientist at UCLA Stein Eye Institute. Dr. Young worked under the leadership of Debora Farber, Ph.D., Karl Kirchgessner Foundation Distinguished Professor of Ophthalmology and Director of the Retinal Biochemistry Laboratory.
Until recently, Ocular Albinism was believed to be caused solely by mutations in the OA1 gene (also known as GPR143), which provides instructions for making a protein that is involved in the pigmentation of the eyes and skin. This discovery was made in the early 1990s, also thanks to research funded by The Vision of Children Foundation.
“However, about 30 percent of patients with clinical manifestations of the disease had no mutations in the OA1 gene,” said Dr. Young. “This raised the possibility that a different gene could be responsible.”
Dr. Young and her colleagues analyzed DNA samples from 26 people who exhibit all the clinical characteristics of Ocular Albinism but do not have mutations in the OA1 gene. They compared these DNA samples to samples from subjects without a personal or family history of the disorder and consistently discovered several mutations in a gene called GNAI3. The results of this research study were published in the September 8, 2016, edition of PLOS ONE, a multidisciplinary open access scientific journal.
Ocular Albinism is a genetic eye disease that is transmitted through the X chromosome. It primarily affects the pigmentation in the eye, which is essential for normal vision. Affected individuals typically suffer from poor clarity of vision (reduced visual acuity), rapid and involuntary eye movements (nystagmus), eyes that do not look in the same direction (strabismus), and increased sensitivity to light (photophobia). They also have problems with the ability to create depth perception when combining vision from both eyes. This is due to abnormalities involving the optic nerves, which carry visual information from the eye to the brain.
Incidence rates for this disorder are difficult to determine, partly due to frequent misdiagnosis. The most common form of Ocular Albinism is known as the Nettleship-Falls or type 1, which affects at least 1 in 60,000 males in the United States, according to the National Institute of Health. The classic signs and symptoms of this condition are much less common in females, who are carriers. Unlike some other forms of albinism, Ocular Albinism usually does not significantly affect the color of the skin and hair.
Ocular Albinism is just one of hundreds of genetic vision disorders. Millions of people around the world have uncorrectable genetic vision disorders, and even obtaining an accurate diagnosis is difficult, as there are limited facilities that can run the tests. Depending on the particular genetic disorder, testing can take up to two months to complete. One of the few centers conducting such tests is the Medical Genetics Laboratory at Baylor College of Medicine in Houston. Richard Alan Lewis, M.D., a collaborator on this research, specializes in the study and diagnosis of hereditary eye disorders at Baylor.
We are excited to be hosting Drs. Young and Farber at our 9th World Symposium, “Where Vision Meets Reality” in San Diego from November 16 – 18. They will be among 19 leading vision and genetic eye researchers who will meet to share and collaborate on their latest research efforts involving genetic vision disorders. Click here for more information on the Symposium.
As you read this page, are you thankful for your sight? Clear vision is often a gift that fully-sighted people take for granted. However, vision disorders are the single most prevalent disabling condition among children in the United States (CDC). There's nothing that will make you more grateful for the gift of sight than seeing the myriad challenges that these children face.
The Vision of Children Foundation knows the effect vision disorders have on families. That's why we're dedicated to treating and curing children's vision disorders. Our vision is a world in which all kids can see clearly.
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