The research project of Dr. Edouard Baulier, a postdoctoral fellow in Dr. Debora Farber’s UCLA laboratory, is designed to find a treatment for Ocular Albinism type 1 (OA1) by using two recently discovered biology tools: induced pluripotent stem cells (iPSCs) and CRISPR/Cas9, a gene-editing tool.
The Vision of Children Foundation is excited to share this update from our team of researchers led by M. Vittoria Schiaffino, MD, PhD at San Raffaele Scientific Institute in Milan, Italy!
"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.”