The Vision of Children
Donation protected
My sons Stephen and Joseph were born with a rare genetic condition called Albinism.The word “albinism” refers to a group of inherited conditions. People with albinism have little or no pigment in their eyes, skin, or hair. They have inherited altered genes that do not make the usual amounts of a pigment called melanin. One person in 17,000 in the U.S.A. has some type of albinism. Albinism affects people from all races. Most children with albinism are born to parents who have normal hair and eye color for their ethnic backgrounds. Sometimes people do not recognize that they have albinism. A common myth is that people with albinism have red eyes. In fact there are different types of albinism and the amount of pigment in the eyes varies. Although some individuals with albinism have reddish or violet eyes, most have blue eyes. Some have hazel or brown eyes. However, all forms of albinism are associated with vision problems.
People with albinism always have problems with vision (not correctable with eyeglasses) and many have low vision. The degree of vision impairment varies with the different types of albinism and many people with albinism are “legally blind,” but most use their vision for many tasks including reading and do not use Braille. Some people with albinism have sufficient vision to drive a car. Vision problems in albinism result from abnormal development of the retina and abnormal patterns of nerve connections between the eye and the brain. It is the presence of these eye problems that defines the diagnosis of albinism. Therefore the main test for albinism is simply an eye examination.
Recently we learned of a study being conducted at The University of Wisconsin by Dr. Michael Struck. The study measures the affects of dopamine on the vision of people with albinism. Stephen and Joseph were lucky enough to be a part of the study. They took dopamine three times a a day for three months. While taking the medication they both had a remarkable improvement in their vision. In addition, it seemed to ease the struggles they have with sensory dysfunction.
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The study will not be published until there are more participants and a trend or pattern can be established.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. The Vision of Children has been funding the study. They are currently working with another organization to provide some financial support to families hoping to enter the study. Stephen Joseph my husband Steve and I are starting a scholarship to assist families in need who would like to participate in the study.
We are asking for donations to help other families as well as our own. The faster we can get people into this study, the faster our boys can have their medicine. Thank you!!
Please donate to:
The Benevento Boys'
Scholarship Fund
via The Vision of Children today!
People with albinism always have problems with vision (not correctable with eyeglasses) and many have low vision. The degree of vision impairment varies with the different types of albinism and many people with albinism are “legally blind,” but most use their vision for many tasks including reading and do not use Braille. Some people with albinism have sufficient vision to drive a car. Vision problems in albinism result from abnormal development of the retina and abnormal patterns of nerve connections between the eye and the brain. It is the presence of these eye problems that defines the diagnosis of albinism. Therefore the main test for albinism is simply an eye examination.
Recently we learned of a study being conducted at The University of Wisconsin by Dr. Michael Struck. The study measures the affects of dopamine on the vision of people with albinism. Stephen and Joseph were lucky enough to be a part of the study. They took dopamine three times a a day for three months. While taking the medication they both had a remarkable improvement in their vision. In addition, it seemed to ease the struggles they have with sensory dysfunction.
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. The Vision of Children has been funding the study. They are currently working with another organization to provide some financial support to families hoping to enter the study. Stephen Joseph my husband Steve and I are starting a scholarship to assist families in need who would like to participate in the study.
We are asking for donations to help other families as well as our own. The faster we can get people into this study, the faster our boys can have their medicine. Thank you!!
Please donate to:
The Benevento Boys'
Scholarship Fund
via The Vision of Children today!
Organizer
Tarsha Crotty Benevento
Organizer
