Vision Hero, Abigail, crushed her beam routine and set a new PR! Her score was a 9.35/10.0!
Vision Hero, Joel Gomez makes an influential PSA.
Watch how a Golfer Lost His Sight and Became a Champion
Joanne has been affected by Ocular Albinism throughout her life, even though she never had the eye disorder herself. When she found out her son, Ryan, had OA she was prepared. “He was the third child in my family to have it,” said Joanne. “I knew what to do, how to get services and the kinds of things we needed to do to help him with his diagnosis.” Despite having OA, this 13-year-old has been resilient and hasn’t let it control how he spends his time. Ryan is an active musician playing piano and trombone as well as playing golf. “I have no problem figuring out how to walk around the golf course,” said Ryan. “It’s just figuring out where my ball is.” When discovering new pieces of music, Ryan has his own technique of learning. “It’s easier for me to use my ear and my other senses to learn the music,” said Beam. “Music encourages me to use my imagination.”
Ocular Albinism is an eye disorder characterized by deficient levels of melanin. Ryan’s Ocular Albinism only affected the pigment in his eyes, not his skin or hair, but it did impact his sight. Through his mom’s personal experience with this eye disorder, she has been able to create a positive environment to help Ryan succeed. “Let’s focus on the things he can do,” said Joanne.
Ryan is not alone in his family. He has two cousins who also have OA. His cousin, Mack, started to notice the effects when he was around age 12. “I’ve always played sports,” said Mack. “I realized it would be a challenge for me to see the same things as my friends, but I’ve adapted in other ways.” Mack runs cross-country in the fall and track and field in the spring. His long-term goal is to go to medical school after completing college. Ryan feels very lucky to have Mack to look up to and ask questions about living with OA. “Being with my cousin, who has had some of the same vision challenges, makes me a lot more comfortable about it,” said Ryan. “It makes me feel like I’m not the only person alive that has Ocular Albinism.”
Mack has been trying to help his younger cousin with OA by having long talks with him and sharing advice. “Don’t pay attention to what people say,” advises Mack. “Stay positive and understand this limitation will create new challenges. This can end up making you into a better person in the future.” Both Ryan and Mack aren’t going to let Ocular Albinism take away their hopes and dreams of success in life. With the help of their families, they have already learned they can achieve anything they set their minds to.
Unfortunately, not all families are this well prepared when they are faced with a newborn infant with a vision disorder. That’s where The Vision of Children Foundation helps by providing information, education, and resources to families throughout the world. The Vision of Children’s mission is to fund vision research to find a cure for genetically caused vision disorders and blindness in children and to provide support to families affected by these conditions.
When new parents Amit and Sapna Shah were told that their beautiful baby girl, Laila, was diagnosed with oculocutaneous albinism, their entire world shifted and was turned upside-down.
“When we first got the diagnosis, it was just heart-breaking. We couldn’t really talk about it with anyone without breaking down. Being Indian, we have more pigment and darker skin. OCA wasn’t really something we were familiar with…we just couldn’t see past the diagnosis back then.”
This is the reality for the millions of families that experience the diagnosis of a genetic vision disorder in a child each year. This news can be isolating, terrifying and can leave many parents and family members with questions that just don’t have answers, even from the world’s top doctors and scientists.
The Vision of Children Foundation is dedicated to changing that narrative.
“What’s great about The Vision of Children Foundation is that genetic disorders are what their foundation focuses on. I feel like they’re aggressive in trying to find a treatment. We see a lot of potential for treatment down the road. They’re headed in the right direction. It’s giving us hope about her future.”
Recent advancements in technology are currently providing the perfect opportunity for our scientists to find cures for these disorders. Our scientists at UCLA Jules-Stein Eye Institute are working tirelessly to repair mutated DNA by using stem cells created from the patient’s own skin to eliminate the risk of treatment rejection. This research is our most promising and exciting to date.
But now, more than ever, we need your help.
With your help, we can continue to fund this life-changing research project that could hold the key to a crystal-clear view of the future for millions of children like Laila who have been diagnosed with genetic vision disorders.
“Now she’s three and…we’re so proud of her. This is her world, you know. This is who she is. She’s got quite the little personality and a great sense of humor. She’s very energetic and she just lights up the room.”
This Holiday Season, please consider making a gift to The Vision of Children Foundation to allow us to continue our vital work. Together, we can light up the world!
Nuala, age 10, wears a bright red flower in her hair when she dances in her tap dance studio. She has on her little metallic shoes and leotard which allow her to move swiftly about the room. Today, she has the whole studio to herself and she can use as much space as she wants.
However, Nuala cannot see very well. She was born with a condition called albinism, specifically the OCA1 type, which takes all the pigment out of her skin, hair, and eyes. This condition creates a visual acuity that can't be corrected. She also has Nystagmus, which causes her eyes to shift back and forth. “They do that all day,” said Nuala. When children at school ask her questions, she knows they are just curious. “I don’t get it [questions] much anymore because everyone knows me. I’m famous,” exclaimed Nuala.
Even though Nuala has these conditions, she has never let OCA1 albinism stop her from achieving anything she wants. She can accomplish anything she sets her mind to like learning a new language. “'Bonjour, ça va?' That means, ‘Hello, how are you?’ in French,” said Nuala. Beyond knowing French, Nuala knows phrases in Mandarin and Italian.
Along with her dancing skills in tap class, Nuala is very accomplished musically. She plays the piano and the violin, and sings in her chorus, in addition to knowing how to tap and speak three languages. “Not being able to see very well really hasn’t stopped me from doing anything,” said Nuala confidently. She has been able to learn so many creative skills and not let albinism stop her from exploring new things.
As Nuala twirls around the studio with her red flower in her hair contrasting her white skin and hair she is free to express herself however she wants.
The Vision of Children Foundation and The Bay Club Hosted Award-Winning Musical Artist to Fund Remaining Research Needed to Find a Cure
The Vision of Children Foundation (VOC), recently held their “Concert With A Vision” fundraising event in partnership with The Bay Club at Fairbanks Ranch Country Club in Rancho Santa Fe. Final numbers show that the charity, whose mission is to cure hereditary childhood blindness and other vision disorders and to improve the lives of visually impaired individuals and their families, was able to net over $500,000 towards finding a cure for genetically-caused vision disorders.
The event featured a Sponsor’s Champagne Reception with music by Greg White Jr. & Ron Elliott, followed by a silent and live auction. A compelling program included testimonies from Jeremy Poincenot, World Blind Golf Champion, and Joel Gomez, a 14-year-old musician who sings and plays four instruments and is a nationally-ranked distance runner. Poincenot, once fully sighted, lost his vision as an SDSU Sophomore at the age of 19. Poincenot, delighted by the audience's compassion, surprised everyone when he announced a surprise auction item that included the opportunity to participate in a round of golf with himself at Fairbanks Ranch Country Club. Gomez, whose heart-warming musical performance brought some attendees to joyful tears, began running once his vision made his passion for soccer nearly impossible as the ball became exceedingly difficult to track. Both young men are legally blind and work to raise awareness for genetically-caused vision disorders and The Vision of Children Foundation.
Despite unexpected showers, the night culminated in an intimate performance by 60’s legends Gary Puckett & The Union Gap. Puckett, unwilling to disappoint the event’s attendees, executed a last-minute, indoor acoustic show performing his top hits including “Woman, Woman,” “Lady Willpower,” and “Young Girl.” Inspired by the generosity of the event's attendees, the night ended in a personal, heartfelt thank-you from Chase Hardage himself, who spurred the creation of the foundation after he was diagnosed with a genetic vision disorder for which there was no cure and no research being done in 1991.
Event sponsors included The Bay Club, Jan and George Devries, Christy Walton, Cal-a-Vie, Four Seasons, The Collings Foundation, Scott Dunn Private Journeys and R.D. Olson Construction.
“We are extremely grateful for the generosity of more than 600 individuals who participated in our event on September 8th to help make our vision of curing genetic blindness a reality,” said Sam and Vivian Hardage, who started the foundation over two decades ago. “We were very honored to have Gary Puckett wholeheartedly embrace our cause, not only by entertaining our guests, but also by making a variety of television and radio appearances in San Diego in support of The Vision of Children Foundation.”
All proceeds from “Concert With A Vision” will assist VOC in funding the remaining two years of a life-changing research grant with the goal of finding a cure for genetic vision disorders.
About The Vision of Children Foundation
The Vision of Children Foundation is a 501 (c)(3) non-profit organization whose mission is to cure hereditary childhood blindness and vision disorders. Based in San Diego, the organization has been a driving force in funding groundbreaking research in its quest to find a cure for genetically-caused vision disorders for children around the world since 1991. To learn more, please visit www.visionofchildren.org.
We at The Vision of Children Foundation are thrilled to present an incredible 13-day tropical excursion to Sri Lanka and The Maldives from Scott Dunn Private Journeys as part of our Live Auction at Concert With A Vision on September 8th! As a special treat, enjoy this guest blog post from Scott Dunn Private Journeys themselves, detailing a small taste of the exquisite adventures possible on The Maldives leg of this dreamy vacation.
Welcome to “natures playground”. Comprised of 2 islands (Chill and Play), Niyama is a tropical paradise that has lush vegetation, ivory white beaches, crystal clear waters and is the ultimate in barefoot luxury. Upon arrival, you’ll be greeted by the smiling faces of the attentive staff, a fresh fruit cocktail, and a cool towel. Nothing is overlooked at Niyama, from the luxurious Maldivian inspired decor, to the adorable bikes at your disposal to leisurely explore the island, and your own private butler. But, a true highlight at Niyama is the fantastic cuisine.
Niyama has an impressive choice of restaurants, featuring a range of international cuisine for every palate, from elevated traditional African at Tribal to casual poolside dining at Blu. And you can’t stay at Niyama without dining at Edge, Nest and Subsix.
Only accessible by boat, Edge is an exclusive overwater restaurant. It’s set under a crisp white canopy, with window covered walls that open out to the calm sea, creating an open feel. Fresh local seafood is the highlight here. Try the lobster and sip champagne as you watch the dazzling sunset.
Get a whole new perspective of the island at Nest, navigate through the jungle on a labyrinth of wooden walkways to your private perch in the treetops (set 6 meters high above the ground!). Feast on delicious avant-garde Thai, Chinese, Japanese and Indonesian cuisine, all expertly paired with sake. While here, you must try the world’s most expensive coffee “Black Ivory”. It’s a truly unique one-of-a-kind experience.
You won’t dine in a place like this anywhere. This lounge is set 6 meters under the sea, and is lit by a magical blue glow, sweeping you into an underwater wonderland. You’ll be surrounded by clear turquoise waters as you dine on a tasting menu featuring crab and Wagyu beef, complimented by handcrafted cocktails. Moray eels, Moorish idols, parrotfish and Hawksbill turtles will glide by as you dine. It’s a very special, unreal atmosphere.
Let your imagination guide you, indulge in the private destination dining for a truly unbelievable experience. Treat yourself to a gourmet picnic for two on a deserted island, illuminated by a roaring bonfire and romantic hanging lanterns. It’s one of the most unbelievable meals that you’ll ever have. Dining here is your own private slice of paradise.
We at Scott Dunn are so excited to be included in supporting such a remarkable charity, and we thoroughly enjoyed creating this amazing prize for The Vision of Children Foundation. Knowing that the proceeds from this unbelievable 13-day vacation in Sri Lanka and the Maldives will go to such an important cause is a wonderful feeling.
The Vision of Children Foundation partners with Illumina’s iHope program to provide limited number of whole genome sequencing tests for families affected by hereditary vision disorders in need.
“The diagnosis of albinism can be confusing for parents, and adjusting to life with the condition can be difficult for affected children,” wrote Brittany Kronick in her September 2016 article published in The Journal for Nurse Practitioners. Her article focuses on pediatric primary care management of children with oculocutaneous albinism 2 (OCA 2), however she is also writing from her own experience.
“I have albinism, OCA, and I’ve always wrestled with how it fit into my life,” said Brittany, who holds an MSN degree and is the pediatric nurse practitioner at New Alternatives for Children, which provides services in support of birth, foster and adoptive families caring primarily for medically fragile children in New York City.
“As a teen I had extra angst,” Brittany said. During her sophomore year, her eyes re-crossed (strabismus), and she felt isolated and angry that she had to deal with a problem that her peers didn’t understand. “Adolescents may focus on potential future obstacles because of others’ lack of understanding of their capabilities,” she stated in her article. “Visual impairment can increase the risk of social exclusion or low community participation.”
These experiences left an impression on Brittany and she decided she is uniquely qualified to do something about it. In her current role at New Alternatives for Children, she provides and manages the medical care for some of New York City’s neediest children. She attributes her success in working with this group to her ability to treat each person with respect and let them know they are not alone.
“I was the only one in my family who has albinism,” Brittany said. “I have a supportive family, but they didn’t quite understand what I could and couldn’t do. So, I’ve been adjusting to life on my own.” She is now working on her doctorate in nursing practice from Columbia University.
Brittany recalled milestones from her youth that reinforced her path of independence. She learned how to read books with regular size print, rather than enlarged print. She participated in gymnastics for 10 years and reached a competitive level. She also played on a baseball team. She said she experienced the most frustration when doctors told her “you can’t.”
“Just to limit someone because they have a condition seems pointless,” she said. “As a clinician, if I tell a parent that their child can’t do something, then they don’t push their children to their fullest potential. That doesn’t seem right.” She added, “I never felt pushed beyond a point of what I could do. I’ve always been motivated. Living with albinism is stressful no matter what.”
Brittany is living proof that a condition like OCA does not have to define a person’s inabilities, but it can contribute positively to a person’s abilities.