[Congressional Record Volume 155, Number 148 (Wednesday, October 14, 2009)]
[Extensions of Remarks]
[Pages E2529-E2530]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




             A TRIBUTE TO THE VISION OF CHILDREN FOUNDATION

                                 ______
                                 

                            HON. DAN BURTON

                               of indiana

                    in the house of representatives

                      Wednesday, October 14, 2009

  Mr. BURTON of Indiana. Madam Speaker, I rise today to salute the 
Vision of Children Foundation. The Vision of Children Foundation is an 
independent, not-for-profit 501(c)(3) organization dedicated to the 
funding of innovative clinical and translational research into vision 
disorders and creating effective therapies. The Foundation supports 
scientists at top universities and academic medical centers worldwide 
who are involved in the most advanced and promising research.
  According to the World Health Organization, globally more than 161 
million people are visually impaired, including 1.4 million blind 
children below age 15. In the United States alone, over 1 million 
children suffer from vision impairment, a loss of vision that makes it 
hard or impossible to perform daily tasks without specialized 
adaptation, and which cannot be corrected to a ``normal'' level. These 
children face technological and socially-imposed obstacles that make it 
difficult to succeed in life.
  The challenges of living with visual impairment are all too real for 
Sam and Vivian Hardage, founders of the Vision of Children Foundation. 
Their son, Chase, now 20 years old, was diagnosed with ocular albinism 
(OA) as an infant. OA is an inherited disorder in which the eyes suffer 
from deficient amount of melanin and pigment, resulting in reduced 
visual acuity, or Nystagmus, and sensitivity to sunlight. The Hardages 
were told that there was no cure, and that their son would never be 
able to play sports or live a normal life. Although Chase's original 
diagnosis was dire, the reality is that all children with visual 
impairments have different visual acuities and developmental potential. 
Many of these individuals, such as Chase, have learned to compensate 
for their disability and have functional and productive lives.
  The Hardages were also stunned to find that no one was doing research 
into understanding OA, much less treating it. Hereditary vision 
disorders such as OA, retinitis

[[Page E2530]]

pigmentosa, and Ushers syndrome belonged to a group of diseases that 
were underrepresented and under-funded. It was clear that if there was 
any hope for finding a cure, funding was needed. In 1990, the Hardages 
established the Vision of Children Foundation (VOC), with a mission to 
cure hereditary childhood blindness and vision disorders, and to 
improve the quality of life of visually impaired individuals and their 
families. It is the only international, non-profit foundation that 
funds genetic vision research into ocular albinism and connects 
affected families all over the world.
  Until there is a cure, the VOC works hard to provide educational 
support and services. Families of the visually impaired often feel 
isolated and confused, and need support to face day-to-day life. The 
VOC believes communication between families, educators, healthcare 
professionals, and researchers who care for these children is critical, 
and the VOC does all that it can to facilitate the process. The 
Foundation maintains a worldwide Family Network that provides 
information and support via constant communication, a biannual 
newsletter, and an informative Web site. Joining the Family Network 
enables parents to contact other families who face similar challenges 
in their geographic region to offer support, and share experiences and 
local resources and programs. Hundreds of families around the world 
belong to the VOC Family Network.
  The VOC strives to enable thousands of children to have a clear image 
of the world around them. The foundation continues to gather and share 
information and tools available to ease the daily challenges that the 
visually impaired face. For example, VOC developed a computer monitor 
system designed to accommodate students and adults with low vision. 
This system works to alleviate the stress and strain that individuals 
with low vision face when using computer technology. The Foundation 
donates monitor systems to schools and individuals nationwide.
  VOC also partners with book publishers to provide educational books 
to eye clinics, schools, libraries, doctors' offices, and families, 
such as the illustrated storybook, ``All Children Have Different 
Eyes.'' These books help to raise awareness, reduce emotional stress, 
develop social competencies, improve academic performance, and increase 
confidence in low vision children.
  These efforts to provide support, education and needed assistive 
resources to children diagnosed with OA have enabled Chase and many 
others like him to have a more normal and functional life. Chase played 
varsity football on a championship team and was his high school's first 
CIF wrestling champion in 28 years. Today, he is a sophomore studying 
business at Southern Methodist University.
  To foster scientific communication and collaboration, VOC hosts a 
biennial World Symposium on Ocular Albinism and genetic vision 
disorders. In this forum, the Foundation brings together top vision and 
genetic eye researchers from around the globe to present and discuss 
the latest discoveries and research efforts involving OA and related 
genetic conditions.
  This year's World Symposium theme: ``Understanding the Pathway--
Discovering a Cure'' was reflected in each of the presentations. The 
symposium was highly successful, with researchers agreeing to openly 
discuss their latest discoveries and research efforts. Updated results 
from the successful recent human gene therapy trials provide continued 
hope for a cure. One of the most important outcomes of the symposium 
resulted in the formation of an informal, web-based forum for attendees 
to continue the collaborative relationships that were formed. The 
Vision of Children Foundation is a leader in fostering these kinds of 
relationships and helping move science forward.
  For eighteen years, the Vision of Children Foundation has been a 
driving force in the worldwide quest for a cure for genetically caused 
childhood blindness. Progress and problems are discussed on a regular 
basis as VOC researchers gather for an invitation only Symposium 
sponsored by the Vision of Children Foundation. In October 2006, Dr. 
James Bainbridge of Moorfields Eye Hospital in London attended VOC's 
European Symposium and described his lab's plan for a human gene 
therapy trial to cure Leber's Congenital Amaurosis. In March 2008, his 
team achieved the world's first successful gene therapy trial on a 
human. Their success was quickly followed by the University of Florida 
and Children's Hospital in Philadelphia, successfully restoring the 
vision of nine young adults who were nearly blind. These young people 
can now see and some can even read lines on an eye chart. All nine 
patients had the treatment in one eye and all have volunteered to have 
their other eye treated. I am told that the medical community is 
equating this discovery to the first heart transplant.
  The Vision of Children Foundation is one of the largest sources of 
non-governmental funding in the world for genetically caused childhood 
blindness research. The urgent mission of the Vision of Children 
Foundation is to drive the research that will provide preventions, 
treatments and cures for children affected by ocular albinism and the 
entire spectrum of hereditary childhood blindness and vision disorders. 
The Foundation has invested millions of dollars to support scientific 
research of diseases of the retina, which cause blindness. I commend 
the steadfast support of and determination of the Vision of Children 
Foundation to eradicating genetically caused vision disorders and 
blindness in children.

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