Pittsburgh Chapter Featured Volunteer
When Bob Morgenstern and his brother, Chuck, were growing up in the 1940s, they had significant issues with their vision. The doctors could only conclude that they had "bad eyes." Not only was research for their disease, retinitis pigmentosa, virtually nonexistent, doctors were unable to even diagnosis it. Their parents sent them to "sight-saving" school, which ultimately provided no help in preserving their vision.
But fast forward to today and Bob is very excited about the progress being made in Foundation-funded research — especially in vision-restoring gene therapy and emerging stem cell treatments. "While I am now 75 and have lost all my vision, I am most excited about what these treatment approaches hold for younger people," he says.
Bob has supported the Foundation Fighting Blindness for more than two decades, and in the last three years, has made generous outright gifts and funded gift annuities in support of cutting-edge research that is holding so much promise.
Before retiring, Bob worked as a rehabilitation caseworker for the Bureau of Blindness and Visual Services in Pennsylvania. Earlier in his career, he was a social worker with the Pennsylvania Department of Welfare.
He currently lives in Coraopolis, a suburb of Pittsburgh.
4-year-old, Family Keep Hope in the Face of Blindness
A rare congenital disorder is robbing the sight from Finley Pletcher's beautiful blue eyes. The 4-year-old has been declared legally blind and retains about 10 percent usable vision. She will eventually go blind.
Hope for a treatment for Finley and others with degenerative retinal conditions lies in research.
Finley is the daughter of Jennifer and Mathew Pletcher of Salem, Conn. Her parents are from Connellsville. Her grandparents are Ted and Phyllis Kovall of Connellsville and Ben and Sally Pletcher of Indian Head.
A year ago, Finley was diagnosed with Leber's congenital amaurosis due to mutations in one of the 14 LCA-associated genes, retinol dehydrogenase 12, RDH12, a very rare degenerative retinal disease that causes vision loss.
Jennifer Pletcher said, "There is no cure and nothing they can do to fix it. It is progressive, and our sweet Finley will eventually lose her sight. How long that will take is anyone's guess. We have seen several retina specialists, and we will continue to watch her vision decrease over time. This diagnosis kills us. Our sweet baby with the beautiful blue eyes may have a life of darkness. It makes me want to run out and get every kids' movie ever made so she can see everything now before her vision goes for sure. I can't imagine her not being able to see all the wonderful things this world has to offer."
Only 3,000 Americans have LCA, inherited through recessive genes. Both parents must have the gene in order for the condition to possibly be passed to their child. Mutations occur on 14 genes. One can be treated. So far, Finley's cannot. Only 120 Americans have Finley's LCA type, located on one of the 14 LCA-associated genes, retinol dehydrogenase 12 (or RDH12), the rarest mutation.
Jennifer Pletcher said, "Life is 10 percent what happens to you, and 90 percent how you react to it. We don't know what Finley's vision will be in the future, but we do know that it will never get in her way of being great. God doesn't give children with disabilities to strong people. He gives them to ordinary, everyday people, then he helps the parents to grow stronger through the journey. Raising a child with special needs doesn't take a special family, it makes a special family."
Finley is learning to use a brailler and will soon use a cane in order to prevent falls. Although too young for kindergarten, the Board of Education for Services for the Blind of Connecticut is already working with her family to develop a range of services once she begins school.
In addition to receiving services for Finley, the Pletchers are reaching out to others, by raising money for the Foundation Fighting Blindness.
The FFB's national efforts drive research to provide prevention, treatment and cures for those with a spectrum of retinal degenerative diseases. Although Finley's condition is very rare, 10 million Americans suffer from other degenerative retinal conditions that cause blindness. Research offers hope for breakthroughs.
The Pletchers and the Kovalls hope friends and family will donate to Foundation Fighting Blindness.
"The more people who know about the foundation and its work, we hope will tell four more people and the word will spread," Phyllis Kovall said. "We're so appreciative of the support. It gives us hope."
Written by: Judy Kroeger, Pittsburgh Live News
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