Two Exciting Events This Quarter

We’re gearing up for two VOC events: the 8^th World Symposium and our Holiday High Tea Fundraising event with Ann Romney. Both of these events are very exciting for Vision of Children for different reasons.

Eighth World Symposium

Soon after its inception in 1991, Vision of Children began hosting Symposiums with our top researchers from around the world.  These symposiums offer a unique approach to advancing vision research, in that they allow researchers to share their data and findings with each other before the final results are published.  In addition, VOC Family Network members are invited to attend these symposiums, and not only learn about the cutting edge research occurring in vision science, but also meet the scientists who are making these advances. The 8^th World Symposium will be held at the Hilton San Diego Resort and Spa on November 6-8.  Find more information and register to attend at visionofchildren.org/2013-symposium

Visions of Success: From Research to Reality

The second event is a fundraising event called Visions of Success: From Research to Reality. The highlight of the event will be a Holiday High Tea with keynote speaker, Ann Romney, a breast cancer survivor, health advocate, and dedicated supporter of vision health. This event will be taking place on December 9^th, at the Grand Del Mar in San Diego, and will include an opportunity drawing, informal modeling of holiday fashions, and a raffle for a 2014 Jeep Grand Cherokee Laredo (donated by Midway Jeep Chrysler Dodge & Ram). We are greatly anticipating this event, as the proceeds will be used to bolster research funding for Vision of Children and for American Cancer Society-sponsored research in San Diego county for rare and aggressive forms of breast cancer. For more information, or to become a sponsor, please visit visionofchildren.org/holiday-high-tea

Synergies of Philanthropy

By Megan Powers

What an interesting time it is to be working in philanthropy – to get behind a tremendous philanthropic effort. 

My philanthropic spirit got started early, having been involved with the “Dance-A-Thon” at my church for several years, before finally chairing the event in 7th grade. Raising money for “Jerry’s Kids” was an annual thing and one we fully supported, despite the fact that we didn't know anyone who needed to benefit from their research or services. 

Remember those days when people would sponsor you by the hour or by the mile for a walk-a-thon? I felt like it was something I was supposed to do—it was intrinsic to who I was. It’s still who I am today, only now I have different reasons for supporting the charities I support. 

I may work for a charity, but my situation is unique. I was already a volunteer fundraiser for Vision of Children and other vision-related organizations before coming to work here. This isn't because anyone in my life has a vision issue, but because of Delta Gamma. “Service for Sight” is DG's chosen philanthropy, and as I've continued to be involved as an alumna, I have continued to support it. It's through my volunteer work with DG that I was fundraising for VOC and met the founders, Sam and Vivian Hardage. It turns out they also support something else that’s important to me. 

Andria Kinnear, VOC's ED (on left), and I
walked in honor of Vivian in 2012 

My greatest passion outside of vision is the fight against breast cancer. Since 2006 I've been one of the top fundraisers (a “Pacesetter”) for American Cancer Society’s Making Strides Against Breast Cancer walk in San Diego. In seven years (and counting) I've raised around $25,000. And, while it took some effort, it wasn't hard. What’s hard, is having to battle the disease three times. 

Vivian has battled breast cancer three times and is winning the fight because of tremendous strides that have been made in research. And now, at work, I have the opportunity to not only fundraise for Vision of Children, but also for American Cancer Society. 

The Vision of Children Foundation is holding a fundraiser on December 9th that will benefit our organization AND American Cancer Society. This special event is called “Visions of Success – From Research to Reality,” and will be a Holiday High Tea, held at The Grand Del Mar. The keynote speaker will be Ann Romney – Ann is a breast cancer survivor, health advocate, and dedicated supporter of vision health. She will address the critical need for medical research to cure breast cancer and genetic vision diseases. 

Synergy has become an "office buzzword," but sometimes there is no better word that applies.

These are my philanthropies that will be joined together—a beautiful synergy. What is your philanthropy? What have you—or will you—dedicate yourself to that’s bigger than yourself?



Megan Powers, VOC Director of Development & Communications

I Think I Can, I Think I Can

Kelley on vacation in South Dakota

By Kelley Burr

There's at least one time in our lives that we are told we won't be able to do something. For instance, I recall hearing, “Kelley, if you jump off that couch you will not fly.” Of course, I completely ignored that statement and after a few stellar bruises, realized that gravity was one thing that will never change. Although my multiple attempts at flying failed, my determination never wavered. 

After learning that their child has a visual disorder, families are usually faced with the words “most likely your child will not…” Although frightening, these words are not a statement of fact. Witnessing the accomplishments that so many kids have made with visual impairments is inspiring. They are playing sports, driving cars, and becoming successful adults. Surpassing all odds, they are pursuing their dreams and succeeding. Rather than suffering from visual impairments, they are living with it! 

These children and their families are what inspire The Vision of Children Foundation to continue to pursue their goal of finding a cure for hereditary childhood blindness and vision disorders. We are determined to fix this problem so that children will never have to hear that they cannot do something because of their vision disorder. 

The Merriam-Webster Dictionary defines determination as a “firm or fixed intention to achieve a desired end.” Hold on to that determination and you might be surprised at what you will accomplish! 

-VOC Summer Intern, Kelley, is an undergraduate at the University of Northern Colorado, studying Recreation, Tourism, and Hospitality. She has headed back to CO for her last year of college and will be missed at VOC!

Learning to See Through His Eyes

Clarence with Mom, Melody, when
he was in kindergarten

There are so many things I have learned through having a visually impaired child that I really don’t know where to begin. Clarence is a handsome, healthy looking 11-year-old boy and very excited to start 6th grade this year. Now, if you pay close attention, you would be able to see there’s something different about him. He plays at recess with his classmates, he loves to play sports, especially basketball, but he can’t always see where the ball is. That’s a snapshot of Clarence--you wouldn't think he had a disability if you just saw him in passing. Funny thing is, sometimes I forget he can’t see very well, especially in low light or dusk, or after a busy day. 

On his church league basketball team 

My son is legally blind due to a neurological vision impairment. This is a condition in which the visual centers of the brain do not process information normally, in his case, due to a brain bleed he suffered at birth. As a result, my son has hemianopsia, which means he has reduced peripheral vision on the right side with both eyes. His eyes also shake from side to side and in a circle--this condition is called nystagmus. This causes him to see images moving or jumping, affecting his depth perception, balance and hand-eye coordination. All of this at times slows him down a bit, but doesn't stop him, and he perseveres. 

Sometimes when I have a challenge before me and am tempted to quit I think of my son and how he figures a way to do whatever he sets his mind to. 

I also learned not only is it okay to ask for help, but that people want to help -- It’s a blessing to be a blessing. His classmates are a wonderful group of kids. Most have been with Clarence since kindergarten and they love him and want to be his helper for the day. 

Goofing around with a friend!

I used to lament when I see a beautiful scenic point or a vibrant rainbow that my son is missing something so special, but he taught me there are different ways to “see.” I have found out that sometimes my vision gets in the way of seeing beauty all around me. Sounds funny doesn't it? But since I can "see" quite well, never needing glasses, I hurry and rush through my day. I can't do that when Clarence is with me; I have to slow down and then I realize how I take my vision for granted and miss out on my surroundings. 

I am learning to view life and the world differently, through his eyes. He has taught me through overcoming the difficulties that come, that there is always an answer. There is always a way. 

Melody Kehres, proud Mom
Bakersfield, CA

Do Good, Look Good, and See Great!

As summer rolls in it is time to “roll out”, sporting your most stylish pair of sunglasses, of course. Whether you are a fan of the Tom Cruise Aviators, or rocking the Ray-Bans; sunglasses make a statement.  And, if you have one of the eye conditions that Vision of Children is focused on, there is also a good chance that you are light-sensitive, making sunglasses even more necessary.  This realization prompted me to start looking into various eyewear companies. 

If you are a glasses company like Proof Eyewear, Warby Parker, or Toms, the statement you make is more than just a fashionable one. These companies, along with others, have made it their mission to sell a product that makes a difference. Their “Do Good” philosophy is changing lives and providing sight to people worldwide.

Taylor Dame

I got a chance to speak with Taylor Dame, one of three brothers that founded Proof Eyewear, who told me their story. Inspired by their grandfather who opened a small sawmill almost 60 years ago, they use wood to make many of their products because they wanted to create unique, environmentally friendly products made from sustainable materials. But more importantly, they wanted to provide products that have meaning and give back. From this, Proof Eyewear was born with a “Do Good” purpose.

When they see a need, Proof takes on the challenge. They have donated to a variety of charities focused on reforestation in Haiti, disaster relief for the tsunami in Japan, and helping recovered child soldiers in Africa. What really caught my eye, were Proof’s contributions to a charity in India that treats curable sight disorders and provides sight-giving surgeries to those in need; raising $25,000 in a year—money that will be used to open an eye clinic in an under-served area of India. 

The Dame Brothers on Shark Tank

While Proof is helping to treat those with curable sight disorders, VOC remains devoted to helping those with incurable hereditary sight conditions. Maybe one day, Proof and other eyewear companies will expand their focus to work alongside The Vision of Children Foundation to find a treatment for “incurable” hereditary conditions.

It is great to see for-profit eyewear companies change lives by giving people the gift of sight. Like VOC, rather than accepting that “seeing is believing”, they believe so that others may see. Each step toward clear eyesight is progress, and we hope that one day every child will see clearly! Thank you to all of these companies who are making a difference, and keep up your “Do Good” work!

-VOC Summer Intern, Kelley Burr, is an undergraduate at the University of Northern Colorado studying Recreation, Tourism, and Hospitality.

Inspiring Family Network Kid and a Mother's Pride

Having been "in business" since 1991, Vision of Children has come to know many of the kids we are trying to help and whose families we have provided support to over the years. Nathan Deese has not only survived, but he has thrived, despite being legally blind. The first part of this blog is from Nathan's Mom, Stacy Fisher, and then an awesome letter from Nathan himself! 
<3 VOC

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Nathan was diagnosed with ocular albinism with nystagmus when he was 3-months-old. My older brother and two of my nephews are also affected. He has been treated by Dr. Zane Pollard in Atlanta since that time. Dr. Pollard did an eye muscle surgery on Nathan when he was 2-years-old, and at 3-years-old he began wearing glasses. We have been blessed to have wonderful people in our public school system that have worked with Nathan to meet his classroom needs. He has exceeded academically since Pre-K and we're about to send him off to college.

The work that Vision of Children (VOC) is doing is so important to our family! We greatly appreciate the efforts that are going into researching OA (and many other vision disorders) which will hopefully lead to a cure or treatment one day. It is a rare disorder, so creating awareness is key & we feel that VOC is doing just that! Because of the work they are doing we also have hope that there will one day be a cure for OA. We look forward to the newsletter and enjoy reading posts that inform us of the progress being made through research, and the stories that others share are inspiring. 

-Stacy

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Dear Vision of Children, 

     My name is Nathan Deese and I am a recent honor graduate of Douglas County High School in Douglasville, Georgia. I also participated in the International Baccalaureate Program (IB), which is the most rigorous academic program offered in the world. In the fall of 2013, I will attend Georgia Tech and plan to major in Aerospace Engineering and minor in Spanish. I have accomplished all of this, and plan to accomplish more, while having ocular albinism with nystagmus. 

     Having OA with nystagmus has indeed hindered me in some instances; I have to sit in the front of the class to be close to the board, and I am unable to play some sports, but I have learned to compensate for these situations in various ways. I use a monocular telescope in class that helps me see the board. At first I was extremely hesitant to use it and stand out, but I have surrounded myself with a supportive group of friends who do not view me any differently. Having such an amazing group of friends has made the past four years of high school so much easier. Since I cannot play sports such as baseball or football, I have become an avid runner. I also cannot drive, but again, my friends and family are always more than willing to get me where I need to be.      
     My advice to anyone would be to take everything in stride and keep a positive attitude. It is extremely easy to become discouraged when you cannot see something far away that everyone else can, but if you look (well, probably squint) at the larger picture, it’s really not a big deal. A sense of humor is also important. My friends and I are always making jokes about my vision! We are able to see the humor in my vision and make jokes that are all in good fun. Lastly, the biggest piece of advice I can give is to always speak up for yourself. If you are unable to see something, don’t sit there and suffer - do something about it! There are many resources available to help. Always keep an open line of communication between yourself and teachers, as well as parents. The most important thing to realize is that being diagnosed with OA is not the end of the world. Always have a positive attitude and focus on your strengths rather than your weaknesses. 

Best Wishes, 
Nathan Deese

CSR – “Buzzword” or Essential Piece of the Puzzle?

It does seem the words "greening," "sustainability" and "corporate social responsibility" (CSR) have become a bit over-used. People can be heard using these terms simply as buzzwords to try and sound like they care, but there typically isn't much depth to what they are saying. It’s tough to pinpoint what the solution is to that because what's at the heart of it all is SO important, but it is worth exploring. Perhaps digging a bit deeper to consider how the organizations we are associated with can do more should be examined. 

Those of you who belong to professional or social organizations typically attend their annual meetings or conferences. Many of these organizations have their own Foundations through which they provide their members with scholarships and education to advance their careers. But what about also providing members and attendees with the opportunity to do more? Those gathered in large numbers for meetings, conferences, and conventions have a tremendous chance to also help the local communities where these events are being held or a charity that might not be supported otherwise. There is great value in meeting face-to-face and supporting communities and charities in the process is another way to show that value.

Consider suggesting to the boards and planners of these annual meetings and conferences that they select a different charity to support each year. If they give their membership a chance to vote on which they will support each year, it will give them even more exposure of the efforts to make a positive impact on the communities in which they are meeting. It could be as little as $5-10 per registration or even just getting one extra sponsor for your golf tournament or opening/closing parties. Providing a charity sponsor-level exposure will also help with their visibility, which does not have a price tag, but still provides great value to that organization.

If we all continue to be creative about our social responsibility, more and more organizations that greatly need support will also be helped! Let's keep what's important in perspective.

- Megan Powers, VOC Director of Development & Communications

Our Mission, A Mom's Gratitude and a Helped Kid!

Our first post in this new blog comes from a thankful Mother in southern California. We were so touched by her gratitude that we asked her if we could share the letter. Part of the Vision of Children's mission is to improve the lives of visually impaired individuals and their families - we would say, based on this letter, we have done that for the Byzak family! Pictured above is Mom Amanda and Adam who is enjoying how his handheld magnifier helps him read.

We look forward to input from more and more Family Network Members and our researchers as we grow this blog as a resource for all who are touched by blindness and low vision.
<3 VOC

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Dear Vision of Children Foundation, 

Earlier this school year, my five-year-old son, Adam, received an electronic magnifier, donated on your behalf. It has proven to be an invaluable tool in his learning. 

Adam was born with albinism resulting in extremely low vision and is considered legally blind. Despite this, he has found ways to function successfully in his environment. However, now that we have started school, he has new challenges and    more demands on his vision that he did not have before. 

The electronic magnifier has helped him overcome those challenges in so many ways. One of the most important benefits is that he is able to sit with his classmates rather than have to sit separately from them while he uses a large CCTV in the corner of the room. This has reduced his barriers to building friendships--one of our major hurdles right now.

At night, we use the magnifier in the bed when we read books so that he can see the details of the pictures better or, if I am having him read, to see the small print. This makes many more books available to us that were not useful to us before. 

Also, the light in the room can be dim and he can still read because of the built in light on the magnifier. This has given him a wider range of comfortable settings for reading. When he was using the regular handheld magnifier we had to use it with bright light in the room which meant we always had to sit at the kitchen table. The electronic magnifier has made reading a more natural and enjoyable experience for the whole family.

We have also brought the magnifier with us during hikes and other outings because he is able to see so many things in greater detail. I have been able to take pictures of bugs   and patterns on leaves and zoom in on them so that he could see them better. 

Thank you so much for helping our son gain access to the world around him. We are a family on a single income. It would have been a major financial challenge to us to be able to buy this magnifier on our own. Thank you for helping us meet his needs and the needs of our family at the same time.

Sincerely,

Amanda Byzak