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.
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