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.
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 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.
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.
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 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.
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!
The first of its kind, this VOC Vision Hero Video takes a look at the life of Jeremy Poincenot, inspirational speaker and World Blind Golf Champion.
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.
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 firstname.lastname@example.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
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.