[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
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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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