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
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AuthorKenny Liles
CategoriesFamily Network

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.”

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AuthorKenny Liles
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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.

 Alejandra Young, Ph.D., Assistant Project Scientist at UCLA Stein Eye Institute

Alejandra Young, Ph.D., Assistant Project Scientist at UCLA Stein Eye Institute

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.

 

 Tyler Underwood

Tyler Underwood

When 26-year-old Tyler Underwood sets his mind to doing something, he doesn’t let anything get in the way of accomplishing his dreams: not the challenge of academics, not the detailed work of his profession in aeronautics, not the perceptions of others about what he can or can’t do, and especially not his genetic eye disorder, achromatopsia.  Typical characteristics of achromatopsia are decreased vision, light sensitivity, and the absence of color vision.

Click here to read the rest of Tyler's story.

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AuthorKenny Liles
CategoriesVision Heroes

The 2016 World Symposium on Vision Disorders will bring together an elite group of the world’s top vision researchers to share and collaborate on their ongoing work before it is published. This Symposium marks the ninth time that such a group has gathered, thanks to The Vision of Children Foundation (VOC), which was founded in 1991. Over the past two decades, the Foundation's mission has been to find cures for hereditary childhood blindness and vision disorders. It has played a leading role in encouraging scientific exploration in this arena.

The Symposiums were launched in 2000 with a special invitation to nine researchers who had been working independently to further the field of knowledge regarding genetic vision disorders. The goal was to bring this select group of scientists together to collaborate and share their discoveries in order to expedite the speed with which their research could be translated into treatments for children who are born with such vision disorders. The steadfast requirement for participating in the Symposium was that all researchers be willing to present their “unfinished” work to the other scientists. At the time, this was a novel concept. Typically, researchers work independently and only share their findings after publishing their peer-reviewed, highly scrutinized and ultimately validated research results. 

The last Symposium took place in 2013 and was described as "representing the greatest brain trust in the field of vision research ever assembled for the genetic vision disorders our scientists are targeting," according to world renowned Ophthalmologist and Professor of Medicine, Molecular and Human Genetics, and Ophthalmology, Dr. Richard Lewis of Baylor College of Medicine, Houston. Since these Symposiums started, there has been a remarkable improvement in the culture regarding the willingness of researchers to share and collaborate to accelerate the pace of vision research.

As we celebrate our 25th anniversary, we find ourselves and the world of vision science on the brink of many discoveries that are already leading to treatments for a variety of vision disorders. Such treatments rely on the combined knowledge of VOC-funded scientists and many others around the world. Gene therapy and stem cell therapies, which seemed but a distant dream when the Foundation was founded, are now becoming reality. The 2016 World Symposium holds the hope of unlocking more discoveries through the collaboration and collegial sharing of knowledge that may truly lead to new treatments and cures in the near future. The Vision of Children Foundation is proud to have played an important role in moving vision science forward so that one day soon children who are born with debilitating vision disorders or blindness will be able to see clearly.

The 9th World Symposium will be take place in San Diego from November 16-18, 2016. In addition to vision researchers and National Eye Institute representatives, vision care providers and families with visually impaired children will be invited to attend.

We depend on sponsors to produce a world class symposium. Please click here for sponsorship opportunities

For more information about attending the symposium or to register, contact Nancy at Nancy@VisionofChildren.org or 858-314-7916

The November/December issue of INVISION Magazine, one of the most widely circulated eyewear publications, includes a short feature of Jeremy Poincenot, World Blind Golf Champ and VOC Vision Hero Ambassador. Check out a link to the PDF below; the feature is on page 38 under Service Shorts - New Products or Services You Should Know About.

INVISION Article

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AuthorKenny Liles

As a service to our Family Network Members and the broader public, we provide updates on research regarding genetic vision disorders. We thought you’d like to know that researchers are currently recruiting participants for three clinical trials on potential treatments for ocular albinism and oculocutaneous albinism. All pertinent information regarding each trial is available on ClinicalTrials.gov, a service of the National Institutes of Health. We’ve posted direct links to the trials below.
 
Clinical trials such as these, along with basic research, are the only way to find cures and treatments for hereditary vision disorders and blindness. Funding such research is at the heart of Vision of Children’s mission.

The Effects of Lutein and Zeaxanthin Supplementation on Vision in Patients With Albinism (LUVIA)

Nitisinone for Type 1B Oculocutaneous Albinism

Clinical, Cellular, and Molecular Investigation Into Oculocutaneous Albinism

*The Vision of Children Foundation is not recommending that you or your family members participate in a clinical study. Choosing to participate in a study is an important personal decision that you should discuss with your doctor. You may also obtain general information about clinical studies from the National Institute of Health.

Want to know what our researchers are up to? We thought so. That's why we're sharing short updates from several of our VOC-funded research efforts. If you'd like to get monthly email updates from us, sign up here.


 Joost Felius, Ph.D.

Joost Felius, Ph.D.

Could a Naturally Occurring Fatty Acid Treat Nystagmus?

Joost Felius, Ph.D., Visual Disorders and Eye Movements Laboratory, Retina Foundation of the Southwest, Dallas

• People with albinism typically suffer from nystagmus, which causes their eyes to constantly move back and forth. There is no cure for nystagmus, and currently available therapies lead to only moderate improvements.

• Dr. Felius and his team are measuring the docosahexaenoic acid (DHA) content in the blood of children with nystagmus. DHA, an omega-3 fatty acid naturally found in the human body, is known to have several benefits. Giving children DHA supplements has been shown to benefit both eye and brain development. Showing a correlation between DHA levels and the severity of nystagmus could lead to clinical trials on the therapeutic benefics of DHA supplementation. 

Posted
AuthorKenny Liles

For nearly 25 years, we've been at the forefront of unlocking the secrets to cures for genetic childhood blindness and vision disorders.  You can help us get one month closer to the cure. Here's how:

Do you have a name, birthday, and email address? If so, you can start an online fundraising page for VOC today.  That's it! That's all it takes to help us get closer to the cure.  It's kind of like starting a GoFundMe page or Kickstarter for us, except all the work is already done for you! Once your page is created you'll even get prompts and help sharing it with your friends and family.  

Our goal is to fund a vision research lab for one month.  We believe we can do it by raising $20,000 -- but we can't do it without your help.

We Believe:

  • We believe all children should be able to see clearly
  • We believe research is the answer
  • We believe treatments and cures are in sight

If you believe these things too, then join our effort today.

www.classy.org/visionofchildren

 

We have a great opportunity! Through Global Giving, we can accelerate the pace of research to cure childhood blindness and vision disorders.

GlobalGiving is a charity fundraising web site that gives non-profits from anywhere in the world a chance to raise money, broaden their visibility and attract new donors. The numbers speak for themselves:  Since 2002, GlobalGiving has raised more than $178 million … from more than 461,600 donors … who have supported nearly 12,200 projects.

Act today to help Vision of Children earn a permanent spot on Global Giving.

We have 30 days… to get at least 40 donors… to raise at least $5,000! All in the month of June!

So check out our Global Giving page and donate today! And don’t forget to share our page with your friends and coworkers!



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AuthorKenny Liles

We were so glad to spend the last Friday in April impacting lives in the class room and on the golf course with Jeremy Poincenot, VOC Vision Hero and Ambassador.  In the morning, Jeremy spoke to a school assembly of about 80 children at Cardiff Elementary School. The kids were beaming with questions at the end of Jeremy's inspirational message, and it was fascinating to see them learning about the challenges of low vision by interacting with Jeremy. The film crew from FortyOneTwenty was on site, with state-of-the-art equipment to capture every moment.

In the afternoon, we visited Morgan Run Club & Resort in Rancho Santa Fe. The film crew interviewed Jeremy, and afterwards filmed him hitting a few balls on the golf course with his dad.  It truly is incredible to see Jeremy and his dad work together as a team, and we can't wait to share Jeremy's story with children and teachers everywhere. Be ready in the near future for the release of our first video in the VOC Vision Hero series!

Spring Donor Appreciation Event

On March 24th, we hosted a donor appreciation luncheon at The Grand Del Mar to recognize and thank our local donors for all their support over the last 24 years. Jeremy Poincenot, VOC’s new Vision Hero Ambassador, shared his journey from being fully-sighted to being diagnosed with a rare genetic disease for which there is no treatment and no cure, and which led to the loss of his central vision.  Read Jeremy’s story here.

Another highlight of the event was a report from Gregory Ostrow, MD, Director of Pediatric Ophthalmology at Scripps, San Diego, and VOC Board member. Dr. Ostrow shared that he has had to deliver the same disappointing news to many patients in his years of practice.  “It’s very painful to tell a parent that their child is losing his or her eye sight and at this time we do not have a cure or treatment,” said Ostrow.  “But all that is changing with new developments in medicine and gene therapy, some spurred by recent VOC contributions.” Ostrow is optimistic that there will be several treatments for genetic eye disorders in the near future.

“The Vision of Children Foundation is funding cutting edge research that is expected to cure certain types of genetic eye disease and blindness within our lifetime,” said Vivian Hardage, VOC co-founder and Board member.    “We are able to do this thanks to the generosity from the donors in our community.  We are very grateful to them and are happy that we could share Jeremy’s remarkable journey,” she said.

 Krista Berry Ortega, Executive Director, at our 2015 VOC Staff Planning Retreat

Krista Berry Ortega, Executive Director, at our 2015 VOC Staff Planning Retreat

I'm excited to be writing to you as the new Executive Director of The Vision of Children Foundation. Since I joined the organization in November, I've been inspired and energized by the team's passion and commitment to the Foundation's vision. We spent the end of 2014 planning for an impactful and engaging 2015, and we have hit the ground running with several exciting programs, which you will hear more about over the coming months.  

During my 12-year tenure in the non-profit sector, specializing in leading strategic initiatives and innovative solutions to scale impact, I have had the pleasure of working at a variety of wonderful organizations in San Diego and New York City. Most recently, I was the Director of Strategic Partnerships at Kids Included Together (KIT), a national non-profit dedicated to helping organizations include kids with disabilities. I led KIT's philanthropic and business development initiatives designed to scale the organization's impact on a national level. During my 2+ years at KIT, philanthropic income was increased by 98% and the organization expanded operations to the east coast by opening an office in Washington, D.C.

I'm delighted to bring my diverse non-profit experience to The Vision of Children Foundation at this significant time in the organization's history. Thanks to your support, our founders, Sam and Vivian Hardage, have worked tirelessly to make fundamental progress over the last 23 years. We're getting close to achieving some major research breakthroughs to change the lives of visually impaired children. I'm excited to be a part of the team that is dedicated to giving all children the gift of clear vision!

Feel free to call 858.314.7917 or email krista@visionofchildren.org to chat - or stop by our headquarters in San Diego any time. 

I look forward to meeting you soon and working together to reach our goals!

Krista Berry Ortega, MS
Executive Director

Posted
AuthorKenny Liles

Dr. Alejandra Young at work in her lab in the Jules Stein Eye Institute at UCLA.

Dr. Alejandra Young’s passion for the cure is evident the moment one walks into her lab. With a Ph.D. in Molecular Biology, Dr. Young is an extremely dedicated researcher who has made finding the solution to ocular albinism (OA) a big part of her career. Her studies will contribute to a better understanding of the pathology of the disease and open new possibilities for OA therapy.

Dr. Young is a scientist with the Jules Stein Eye Institute at UCLA and has been a Vision of Children researcher since 2008. Most notably, she was selected as our Fellow and served in that capacity from 2011 – 2013. Her current research strives to combine stem cell therapy and gene therapy to treat ocular albinism.

Gene therapy is a powerful tool that has been tested for the prevention of blindness in a variety of ophthalmic disorders. Conventional methods for transferring functional genes have included the use of viruses, synthetic liposomes, and nanoparticles. However, these methods of gene transfer not only use infectious agents but are often inefficient, requiring multiple applications. Recently, microvesicles (MVs) released by stem cells have been identified as possible delivery vehicles for gene transfer. MVs are used by cells under normal conditions as part of a cell-to-cell communication system, since they can transfer their contents (such as nucleic acids and proteins) to other cells.

Dr. Young is investigating whether OA1 protein-containing MVs derived from engineered stem cells can transfer their contents to the abnormal retinal pigment epithelium of mice that serve as a mouse model for human ocular albinism. Successful repair of the retinal defects found in these mice might lead to new treatments for OA patients in the future.