Make your own free website on Tripod.com

Ocular Albinism Related News

The following articles were written by the webmasters.  Most are abbreviations of articles from other sites.  At the end of each article there is a link to the full articles.  Note:  these links open other web sites in new windows.

Vision of Children Foundation Begins a Ground-breaking new Program! -N-E-W-

At the 2002 NOAH Conference in Concord, CA, San Diego's VOC Foundation, the leader in OA research, started up their new Patient Database Registry.  The registry is the first of its kind in the world of Albinism research.  We highly encourage you get involved with the registry by contacting the VOC Foundation's website here.  The Vision of Children Foundation is a very respectable organization based in San Diego, CA.  Elizabeth Dole is an Honorary Board Member, and VOC's Medical Advisors work at the Baylor College of Medicine in Houston, Texas.  Baylor College of Medicine is one of the most respected Colleges of Medicine in the United States.

NOAH Holds its 2002 National Conference -N-E-W-

Earlier this month NOAH help it's very successful National Conference in Concord, CA.  To hear what people are saying about this great conference that brought together people from around the world that all have one thing in common for three glorious days visit the NOAH Website and check out the Albinism-On-Line-Community here.

NEI to Announce Grants for OA Research  -N-E-W-

The Vision of Children Foundation's Spring 2002 reports that the National Eye Institute (USA) will announce the winners of it's grants (totaling $2 Million) by the end of September 2002.  For more information on the grants see the below article.

First Ever OA Research Reveals much Hope in the Future of Gene Therapy! -N-E-W-

Click here to see the lab report published in Italy.  (Note: requires Adobe Acrobat Reader) 1.1MB

NEI Announces More Funding for OA Research

In January 2002 the National Eye Institute announced research grants for scientist.  Click here to read the entire article which provides information about the grants and what is already known about Ocular Albinism.

VOC Foundation Holds SymposiumTwenty-one scientists attended the symposium representing diverse institutions.

Recently the Vision of Children Foundation (go) held the Second Annual World Symposium on Ocular Albinism.  Over twenty-one of the nations top researchers gathered in San Diego, CA.  These researchers come from some of the most highly recognized research facilities and universities in the world.  See more on this story on here.

VOC Foundation Raises Money for Research

The Vision of Children Foundation (go) recently held the "Bocelli Event" and raised $200,000 for Ocular Albinism and other vision disorder research.  Read more.

OA Gene Test now available

Genetic Screening Now Available.United States families can now be tested for the OA1 gene.  The test uses a blood sample to determine whether or not the OA1 gene is present.  This test costs about $600 per patient and can confirm or disprove a diagnosis.  This procedure may or may not be recommended for you.  You should seek referral from a specialist before spending your time and money getting a test.

Read more on this article

 

The Peoples Genome Celebration

As you know the mapping of the first ever Human Genome is a milestone in scientific research.  As you know the mapping of the genes could lead to cures for nearly every genetic disease including Ocular Albinism.  While this may be exciting news to some, there are two major questions that are commonly asked:

QUESTION: What good does Human Genome do for me?

ANSWER: The mapping of a Human Genome could mean a cure for nearly every genetic disease!  Because OA1 is a genetic disorder, there could one day be a Gene Therapy to cure Ocular Albinism as well as many other genetic disorders.  In a sense, we could eliminate genetically inherited disorders.

QUESTION: What if I like being an Albino?

ANSWER:  Many of us are happy being "Albinos".  We take pride in who we are and how we look.  When a cure or therapy is available, many will flock to "fix" themselves; however, many will hesitate.  By changing our genes to block albinism, we can ensure that our children will not have albinism.  This is a very controversial matter and many people would assume to stay the way they are.  The choice will be up to you if it is ever available to our generation.

 

[Picture credits: The Vision of Children Foundation - http://www.ocularalbinism.org : The National Eye Institute/The National Institute for Health http://www.nei.nih.gov : NOAH http:www.albinism.org ]