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

Posted
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!



Posted
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.

Purchase your Santa Dollars today

Spreading Hope and Cheer

We are excited to launch our holiday season campaign that puts the 'fun' back in 'fundraising.' Santa Dollars are a GREAT gift for kids, friends, family, and co-workers.  Check out our Santa Dollars 2014 page for more info, and to purchase yours today.  

Funding the way to a cure

Benevento

The Benevento family began a fundraiser recently that has stretched into VOC Fundraising month. Both of their boys were born with oculocutaneous albinism (OCA), and were recently able to participate in Dr. Struck's clinical trial.  While participating in the trial, Stephen and Joseph both experienced a remarkable improvement in their vision, but had to cease the medication at the end of the trial.  

Sadly, they had to stop taking the medication because the study is not published yet. The drug is not FDA approved for this purpose. The study will not be published until there are more participants and a trend or pattern can be established. The problem is, this study is not funded. We paid out of pocket, almost $10,000 total. Other families would love to participate but can not shoulder the financial burden.
— Tarsha Crotty Benevento

For this reason, Tarsha and her family started a fundraiser to help other families touched by OCA participate in this clinical trial.  Their goal was $5,000, and they've already raised over $3,300.  Check out their GoFundMe, and join the cause by donating or sharing with your friends on facebook.  

Hope is in Sight!

 

 

#VOCtheBucketStopsHere

For two months, VOC was front and center at the Walgreens store in Encinitas. Huge VOC banners hung from the ceiling and $1 donation cards plastered the front wall. For the second year in a row, the store encouraged customers to donate to VOC at check out.

VOC Visual Challenge banners hanging in Walgreens' Encinitas location

Store Manager, Hunter Richmond, stands next to the display of the VOC Challenge video and donate cards.

“I wanted to come up with something that will grab customers’ attention,” said Store Manager Hunter Richmond. So, on the heels of publicity surrounding the ALS ice bucket challenge, Richmond decided to apply the idea for our cause.

He challenged his employees to an ice bucket challenge, made a hilarious youtube video, and played the video on a loop on a monitor next to the cash register. Richmond also showed the video at a district management meeting, and encouraged other managers to douse themselves with icy cold water and donate cash to VOC.

Final numbers are still being tallied, but it looks like Richmond and his colleagues raised more than $300 for VOC. Way to go!

Want to do your own VOC Ice Bucket Challenge?

Make sure to film it and share it on youtube or facebook with the hashtag #VOCtheBucketStopsHere , and challenge your friends and family to donate toward cures.

Just in time for VOC Fundraising Month, a VOC family sent us the results of their recent fundraising event.

Lucas and Dylan, VOC kids


Attendees at the Shot for Sight Mitzvah project, a fundraising event benefiting VOC

Lucas and Dylan celebrated their B’nai Mitzvah last month.  Having been born with ocular albinism and being familiar with the work of VOC, they decided to do a Mitzvah (charitable) project benefiting VOC.  They called it Shot for Sight, and invited all their friends and family to come to the house for a free-throw shooting contest. 

The event raised more than $600, which was donated to VOC for vision research! We commend Lucas and Dylan, and their parents, for their creative support of VOC. Thank you so much!

 

Join Us

Families and kids around the nation are joining the cause during October, VOC’s Fundraising Month.  How will you join the cause to help kids see better? Hope is in sight!

October is VOC Fundraising Month


In September 2006, VOC awarded scholarships to the Space Camp for Interested Visually Impaired Students (SCIVIS). It’s great to see that SCIVIS is celebrating 25 years of making lifetime memories for visually impaired students.  Keep it up!

 Check out this comment from a visually impaired student that VOC sent to Space Camp:

Thanks again for giving me the chance to go to space camp to learn all of these wonderful things about one of our nation’s greatest triumphs and the chance to have the experience of a lifetime.  Space Camp Was Amazing! - Tyler

Last week, we celebrated a very special birthday.  Vivian Hardage, VOC co-founder, is a three time breast cancer survivor and constant source of inspiration to so many. She celebrated her birthday last week, and we invited many of you to join in the celebration by signing up for the Ralphs Community Contribution Program. We gave her a card with the names of all who signed up, and a flower arrangement to show our appreciation and good wishes.  Thank you to so many in the VOC family who show your love and support!  

And there's still time to sign up if you want to join in the fun.  

Posted
AuthorKenny Liles

October $2,000 Contest and $5 New Member Bonuses Mean Bigger Donations for Vision of Children Foundation

Fall is here and we're looking forward to the holidays. What better time to help Vision of Children Foundation just by sharing. Tell your friends, even friends who support some other cause or charity. Each person who joins iGive in October for the first time can mean $5 automatically donated to his or her cause ... no purchase necessary! All they need to do is try the iGive Button through 1/15/15.


The person who gets the most new members to join iGive in October and try the Button through 1/15/15 earns $1,000 for his or her cause - no matter what cause or charity the new members they invited choose to support. $500 prizes go to the second and third place winners' causes.

Share your special Tell A Friend link to get credit for the contest (it's the only way to get credit). 

Go get the special link from: http://www.iGive.com/html/tellafriend.cfm

At your Tell A Friend page you'll also be able to see which of your friends are helping you win Vision of Children Foundation one of those sweet prizes.

Why share with your friends? -

  1. You could win $1,000 or $500 for Vision of Children Foundation.
  2. When friends shop, they'll help Vision of Children Foundation or their own favorite cause.  Why not let them take advantage of over 1,500 stores that want to help?
  3. The average shopper is raising over $30 - $100 a year for their cause ... all for free.
  4. It's simple and automatic..
  5. Five bucks free, just for trying us out.
  6. The more iGive members, the better the deals we can get from stores.

Spread your iGive link everywhere (Facebook's a great way, but Twitter, email, blogs, bulletin boards, and handouts all work).

Get your personalized Tell A Friend link:
http://www.iGive.com/html/tellafriend.cfm

As always, if you have any questions, please feel free to contact us
at http://support.iGive.com

Good Luck!

Posted
AuthorKenny Liles

Ralph's grocery stores will automatically donate a portion of your purchases to benefit Vision of Children if you register your loyalty shopping card.  Participating customers must re-register their card for the Ralph's Community Contribution Program as of September 1 in order for our charity to receive the contributions.  If you love VOC and shop at Ralph's, this is an effortless and effective way to support your favorite charity.  See instructions on re-registering your card below.  Thanks for your support!


**WEBSITE REGISTRATION INSTRUCTIONS**

 

IF YOU HAVE NOT REGISTERED YOUR REWARDS CARD ONLINE

1.      Log in to www.ralphs.com

2.      Click on ‘Create an Account’

3.      Follow the 5 easy steps to create an online account

4.      You will be instructed to go to your email inbox to confirm your account

5.      After you confirm your online account by clicking on the link in your email, return to www.ralphs.com and click on ‘my account’ (you may have to sign in again first).

6.      View all your information and edit as necessary

7.      Link your card to your organization by clicking on:

a.      Community Rewards

b.      Edit my community contribution and follow the instructions

c.      Remember to click on the circle to the left of your organizations’ name

 

IF YOU ARE ALREADY AN ONLINE CUSTOMER

1.      Log in to www.ralphs.com

2.      Click Sign In

3.      Enter your email address and password

4.      Click on ‘My Account’ (In the top right hand corner)

5.      Click on Account Settings

6.      View all your information and edit as necessary

7.      Link your card to your organization by clicking on:

a.      Community Rewards

b.      Edit my community contribution and follow the instructions

c.      Remember to click on the circle to the left of your organizations’ name

Do you think he would rather wear cheese or throw cheese?”  

This question from Finn, our nine-year old son, marked the end of our visit to Madison - Wisconsin. It was the last of three trips to the University of Wisconsin where he was taking part in a clinical drug trial. Standing in the airport gift shop, Finn was trying to decide on a gift for his seven-year old brother Oscar and had narrowed the choices down to either a “cheese head” hat or a “cheese” football.  As Finn debated the pros and cons of each souvenir it struck me that this decision was more difficult for Finn to make than it had been for him (and us) to agree to take part in the dopamine drug trial.  He finally selected the football and we were the last passengers to board the plane for Canada.

finn


Finn was born with oculocutaneous albinism, OCA1. When he was three-months old we were given the hopeless diagnosis; our son was legally blind. There was nothing we could do for his vision, and to “...come back again in five years.” Since that diagnosis, together with our fantastic pediatric ophthalmologist, Dr. Terri Young,we did everything that could be done to help improve his vision including patching and strabismus surgery, but these interventions did not solve all his vision problems. Fast forward to April 2013: we learned about Dr. Struck’s clinical drug trial at UW Health to study the effects of dopamine replacement on the eyesight of people with OCA1. After some background research and speaking with Finn’s ophthalmologist, we presented Finn with all the facts. It would mean three trips to Madison, some missed school and taking pills three times per day for three months. We explained that he might also experience some side effects like an upset stomach and bad dreams. Finally, after going through it all, we had to tell him there was a chance that the drug would not have any effect on his vision. Tough stuff for a nine-year old to comprehend, but Finn is a competitive soccer player and never leaves anything on the field. He decided it was worth the effort regardless of the outcome.


Our first visit with Dr. Struck and his team was in May 2013. The clinical research coordinator, Angie Wealti, greeted us warmly in the lobby of the UW Heath Eye Clinic. Understandably both Finn and I were nervous but Dr. Struck was engaging and friendly. He and Finn chatted about Premier League soccer and Finn’s favorite players all the while answering some general eye and health related questions.


Over the next six hours, with a quick break for a snack around lunchtime, Finn participated in five vision tests. He was asked to arrange colors in a spectrum, read eye charts and look at black and white dots and patterns on a television screen. According to Finn the electroretinogram was the most exciting test. It involved sitting in a dark room for forty-five minutes and then looking at red dots and white flashes on a monitor.


Angie escorted us from one test to the next, along the way introducing us to all the doctors, orthoptists and ophthalmic technicians who work on this project.  Everyone was friendly, caring and helpful and took the time to explain each test to Finn directly, telling him why they needed to do it and what it measured. Finn’s natural curiosity took over and by the end of the first visit he thought he might give a short presentation to his class about his experiences with the clinical trial.


The second visit was three months later, after Finn had been on the prescribed drug protocol for Levodopa/Carbidopa. Identical to the first set of tests, Finn now knew what to expect and was more relaxed and very curious about the result of each test.


Over the course of the three months that Finn took the pills, he only experienced a tummy ache one morning after taking the pill on an empty stomach. The most difficult part of the whole process was remembering to take the pills after each meal every day.  We did forget a couple of times but after the first month it became a habit. The final visit with Dr. Struck and his team took just two hours and we were done before lunch.  As usual the visit was well-organized and seamless with almost no waiting time between each test.


Participation in Dr. Struck’s clinical drug trial was a positive learning experience for Finn and our family. He learned about OCA1 from a different perspective. Undergoing the tests and speaking directly with the doctors sparked his interest in learning everything he could about his condition and then taking ownership of that knowledge. 


A year later, Finn looks upon his participation in the drug trial as a positive and constructive experience, one where he was able to do something proactive to help himself. Back at school he now approaches his “differences” from a confident point of view. He has learned to be an effective advocate for himself regarding his low vision. Most importantly, on our last flight home from Madison while gripping the “cheese” football, he told me that even if no improvement in his vision is detected, he felt that he has “helped science” and that maybe his contribution “...could help other kids in the future, but we won’t know unless we try these kinds of things Mom.”  

This post was contributed by Roben Stikeman Boyle, a VOC Family Network Member and mother of a participant in Dr. Struck's Dopamine Replacement Clinical Trial.  Thank you, Roben, for sharing your family's story with us.