Thank you

For your very generous In-Kind Grant

Fuchs' Corneal Dystrophy Gene Found!

A link has been found to a specific gene that is thought to cause Fuchs' Corneal Dystrophy (FCD), a late onset genetic eye disease that is thought to affect 5% of the U.S. population over 40.  A team of 13 scientists, lead by Albert O. Edwards, M.D., P.Hd, a molecular biologist at University of Oregon at Eugene, OR, found the link as reported in the New England Journal of Medecine on august 25,2010.  Dr. Edwards said that understanding the genetic predisposition for FCD may be helpful in selecting patients for new studies of the disease.The Abstract or an Editorial may be read at the NEJM.
 

 Our Mission:
To Give Hope Through Knowledge and Information

.Specific Purposes:

• To provide education and support to people who suffer from a corneal dystrophy.
• To provide guidance and knowledge resources for people seeking treatment and help in dealing with visual recovery after transplant or other issues related to corneal dystrophy.
• To encourage research into the causes and possible cures of corneal dystrophy.
• To encourage development of improved treatments and procedures that will enable faster and better visual ability.
   

How do we do this?

• Provide an on line support groups, over 2000 active members, that share information and experiences on line.
• Web sites, literature, DVDs available.
• Hosting Corneal Dystrophy Symposiums where corneal specialists present peer-level information in a forum for patients and family.
• Formation of Local Groups (open to all) which meet for lunch to discuss issues common to those with corneal dystrophies and their loved ones.
• Volunteers to speak at service clubs such as Rotary, Lions etc.
• Continuing dialog with leading researchers into corneal dystrophies, corneal surgeons and specialists about the latest and most promising developments in surgery, studies, genetics and practical ways of coping with the disease.
   

The Corneal Dystrophy Foundation,
a 501 (c)(3) Public Benefit Charity
EIN 20-1803239

A volunteer-driven organization.  All contributions go towards sustaining our current programs and working towards new programs to help educate both the public and patients about corneal dystrophies.

The Foundation provides support for several Corneal Dystrophy on line groups on the Internet: Fuchs’ Friends and Cornea Transplant groups at YahooGroups.

The Cornea is the “window to the eye”.  It is the crystal clear, slightly domed part of the eye through which you see your iris and pupil.

Corneal Dystrophy is an eye condition in which the  cornea thickness increases due to elevated pressure within the cornea.  Normally corneal dystrophy is a slowly progressing disease.  For more explicit detail click the following phrase -  Corneal Dystrophy.

About Fuchs’ Support Groups:

We established the original support group for Fuchs’ Dystrophy in 1998.  Its name is
Fuchs’ Friends

Since then, other groups have popped up on the Internet  Unfortunately, a great deal of medically incorrect information has been disseminated to people who have joined other groups.

A group of ophthalmologists monitor our message board to ensure we do not give medical advice.  We are patient-advocates, not medical professionals.

Our foundation is listed by the National Institute of Health at their web site as a recognized support group for Fuchs’ Corneal Dystrophy.

Over 5000 people have been members of Fuchs’ Friends in the past decade.  Membership is worldwide.  We currently represent 65 countries.  Our discussion board with almost 100,000 logged messages provides sharing of experiences, information and support.  Members discuss all aspects of corneal dystrophy, including symptoms, coping, treatment, transplants, recovery progress, insurance and research.

Volunteer Moderators within the Foundation maintain more than 300 pages of information for members, regarding

• The latest information on advanced transplant procedures.
• Research on and access to important information about corneal dystrophy and related vision issues covered in web sites, print media articles, and research papers. 
• Tips for coping with the visual impairments of corneal dystrophy.
• A list of doctors recommended by member/patients.
• Tips for use of special accessibility features in computer operating systems.
• Sources for special sunglasses and helpful visual equipment.
• DVDs, videos, pictures and speakers’ content from our events.

In alternate years we host an educational symposium and conference in a major US city for the purpose of meeting and hearing top corneal specialists, researchers, and other eye care professionals deliver the latest information on corneal Dystrophies in areas of surgery, studies, genetics and practical ways of coping with the disease. 

We continue to present and expand our educational symposiums and conferences, online information, and corneal dystrophy publications.  The Foundation offers our support to eye care professionals in matters of patient information and training, advances in treatment, and corneal dystrophy research.

Copyright © 2010 - The Corneal Dystrophy Foundation.