Project3000.com

One Father's Fight to Save His Daughter's Vision

Shawn Oetzel
With salaries of Major League Baseball players reaching new heights as guys are signing for $100 million and more, it is easy to fall into the trap of believing these players are living a charmed life. With all that money one would think the players would have it made and not have a care in the world. This may be true for some players, but for Chicago Cubs All Star First Baseman Derek Lee this charmed life came to a screeching halt when it was discovered his daughter had lost her vision in one eye.

Derek Lee's daughter, Jada, suffers from Leber's Congenital Amaurosis. LCA as it is commonly referred to, is an inherited form of blindness that usually affects children at birth though it can also appear in early childhood as well because of its degenerative nature. This was the case with Jada Lee as the condition was not discovered until she was 3 years old.

LCA was first discovered in the 19th Century by Theodore Leber. It generally appears shortly after birth, and is often characterized by slow pupillary responses and eventually leads to severe vision loss and many times blindness. Nystagmus is also a common trait of LCA. This is rapid and rhythmic movement of the eyes, and is completely involuntary. LCA is believed to be cause by the abnormal development of photoreceptors within the eye.

After learning of his daughter's condition, Derek Lee stepped up to the plate once again; this time not in any ballpark, but into the arena of research and testing. Along with Boston Celtics' co-owner and CEO, Wyc Grousbeck, Derek Lee has helped establish Project3000 with the goal of identifying every man, woman, and child in the United States who has LCA which is believed to be around 3000 people. This is where Project3000 gets its name.

Unfortunately at this time there is no way to restore vision once it has been lost due to LCA. There has been some success in being able to correct vision loss in animals that suffer from similar conditions, and it is hoped the same kind of treatments will be ready for testing with people soon. This is one reason why it is imperative to identify those who suffer from LCA.

There have been some breakthroughs in the fights against LCA. One of the actual genes that cause the disorder has been identified, and there have been new developments in utilizing "disease-causing alterations" to those genes. The problem however, is this treatment is so new many do not even know that it exists. It is Project 3000's hope to find the 3000 Americans with LCA and educate them about these new treatments.

According to the Project3000 website, "Project 3000 seeks to identify every person in the United States affected with LCA and offer them state of the art genetic testing on a nonprofit basis through the John and Marcia Carver Nonprofit Genetic Testing Laboratory at the University of Iowa."

Chicago Cub Derek Lee and Boston Celtics' CEO, Wyc Grousbeck have been joined in Project3000 by The Foundation for Retinal Research, The Foundation Fighting Blindness, and The Carver Nonprofit Genetic Testing Lab. Together, they have come up with the five goals of providing hope, providing accurate information, finding the remaining genes, finding cures, and making genetic testing the standard of care for LCA.

Since Project3000 was first announced in September 2006, a new interest in LCA has started to take effect in the medical community. Retinal specialist, Dr. John Kitchens, along with his partners has been identifying everyone in the State of Kentucky who has LCA. Dr. Richard Weleber of the Casey Eye Institute in Portland, Oregon developed a questionnaire for his patients making those with LCA easier to identify.

With momentum for Project300 building and the drive of a loving father trying to help his daughter leading the way, there is great optimism for the future for those suffering from LCA. With new breakthroughs in treatment, and new patients being identified seemingly everyday, the fight against LCA wages on, but thanks to Derek Lee and Project 3000, there does appear to be many reasons for hope.

Dr. Edwin Stone, a professor of ophthalmology at the University Of Iowa Carver College Of Medicine and the scientific director of Project 3000 had this to say, "Working together, sports fans, professional athletes, patients, parents, doctors and research scientists are already making terrific progress in our understanding of LCA. And with all this momentum, we are looking forward to even greater things in the coming year."

Muskrat, Carrie, (11/21/2006). "Cure for LCA is Lee's goal in life". Retrieved

February 10, 2007 from, http://chicago.cubs.mlb.com/news/article.jsp?ymd=20061121&content_id=1744643&vkey=news_chc&fext=.jsp&c_id=chc

The John and Marcia Carver Nonprofit Genetic Testing Laboratory, (2006). "Project

3000: Two Major Sports Figures Team Up to Fight an Important Cause of Childhood Blindness" Retrieved February 10, 2007 from,

http://carverlab.org/project3000/

Wikipedia, (2007). "Leber's congenital amaurosis" Retrieved February 10, 2007

From, http://en.wikipedia.org/wiki/Leber's_congenital_amaurosis

Published by Shawn Oetzel

I am a writer and sports fan, especially Chicago sports. My debut fiction novel, DYING MOON, was published in May 2009. Short stories, articles and reviews of mine have appeared in a number of online and pri...  View profile

  • LCA is believed to be cause by the abnormal development of photoreceptors within the eye.
  • Unfortunately at this time there is no way to restore vision once it has been lost due to LCA.
  • The problem however, is this treatment or therapy is so new many do not even know that it exists
LCA is often confused with Leber's hereditary optic neuropathy, which is a different disease also discovered by Theodore Leber.

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