Philanthropy - SO Important

Philanthropy - SO Important

Friday, May 16, 2014

One Family's Perspective on Dr. Struck's Dopamine Replacement Trial (OCA)

“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 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. 

Tuesday, April 22, 2014

The Will To See - A Family Network Member's Perspective

We'd like to take a moment to introduce a VOC Family Network Member who provides a constant source of encouragement and information for families living with a vision disorder.

Sarah is a mom to two boys and a Swissy puppy, a marketing consultant, passionate blogger, aspiring author and technology geek. Since 2005, when her oldest son was born with gastrointestinal complications, Sarah has built and grown her consulting business, DeNike Communications. In 2009, after her youngest son was diagnosed with Ocular Albinism, she started The Will to See, a blog that chronicles the balancing act of raising children with vision and GI issues while building advocacy and a voice for these conditions.

While it began as an outlet for coping with life’s daily struggles and joys, The Will to See has become a resource for families struggling with pediatric GI and vision issues. You can follow Sarah here….

Blog – The Will to See
Twitter - @thewilltosee
Instagram - @thewilltosee
Flickr – thewilltosee
Pinterest - @thewilltosee

You can also look forward to a guest post from Sarah on our blog as well.  

Monday, March 17, 2014

"No Need for Sight When You Have a Vision"

              “No need for sight when you have a vision.”

This motto is from an American track and field Paralympic athlete named Lex Gillette. As a child, he experienced retina detachment in both eyes and was ultimately left without sight. Yet even though Lex was unable to see, he didn’t let this stop him from achieving his dream.  He won a silver medal from the 2012 Paralympic Games, a world championship and gold medal in the long jump for the USA in 2013. These incredible achievements were all accomplished not with his sight, but by having a vision.
            As a member of the Delta Gamma Fraternity, Lex Gillette’s story really impacted me. Delta Gamma’s philanthropic purpose is Service for Sight and helping the visually impaired. As a member, I volunteer at the Braille Institute and participate in events pertaining to helping the visually impaired.  I am continually surprised when attending these events how much people with vision disorders can impact me. Hearing their life stories and how they have overcome difficulties is so inspirational to me.

            Because of Lex Gillette and Delta Gamma’s philanthropic purpose, I found myself as an intern for the Vision of Children.  A couple years ago, a vision disorder was something I never even thought about.  I was very naive about visual impairment because it wasn’t ever a part of my life.  Yet now, two years later, I am having a blast as I learn new things and am giving part of myself to help the blind and visually impaired. Whenever I come across stories like Lex Gillette’s, it simply amazes me and brings me such happiness knowing that I can be involved with a foundation that focuses on helping the visually impaired.

Lex Gillettes site:

-          Kayla, a VOC Intern and student at San Diego State University  

Wednesday, October 2, 2013

Two Exciting Events This Quarter

We’re gearing up for two VOC events: the 8th 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 8th 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

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 9th, 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

Thursday, August 29, 2013

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

Thursday, August 15, 2013

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!

Thursday, August 1, 2013

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