Corneal Dystrophy Foundation

 Corneal dystrophies are genetic diseases, if left untreated, blindness will occur, eventually, in both eyes.  Our online support community provides many types of resources to those who join it.

Alphée, 8 years old in the Champagne District of France was tentatively diagnosed with Posterior Polymorphous Dystrophy (PPMD), and a devastating prognosis of possible complete blindness in a very few years.  Her father, a high school teacher of Physics, wrote to us for possible help and we were able to connect him with one of the most capable and talented corneal specialists in the world, in a nearby country, for an independent evaluation and possible course of treatment.  We continue to follow Alphée's progress through correspondence with her Dad, Vincent.

Silvina, in Argentina, (Photo above)was diagnosed at age 39. In May of 2015 she found  The Corneal Dystrophy Foundation on the Internet. She told us later that the first words that caught her attention were, Patient Advocacy since 1998. "Little did I know what those words would come to  mean to me.” After years of discouraging encounters and misdirection, she contacted the Foundation directly and through their hands on efforts was able to locate a doctor who could perform the appropriate treatment plan.

During April 2016 -Donor tissue has been promised for Silvina's upcoming surgeries by an  international eye bank and Silvina is waiting for final approval of the proposed procedure from her Social Insurance Authority.

In addition to the eye bank and our Foundation Shiley Eye Institute's Cornea Department has provided expert analysis of Silvina's condition, working remotely with digital records provided to them.

Carlos  in Texas , a retired military veteran sent a $100 donation and told us in an unsolicited thank you letter :”After receiving a DMEK. In 5 days I had 20/20 vision again. “It almost seems like a miracle ! “I owe much of my good fortune to your organization.”

Free literature available at http://www.cdfpubs.org

Michelle in Indiana, is the mother of three, a Teacher’s Assistant.  Her husband’s company laid him off. She was driving 50 miles to work and went off the road due to her vision condition. Through the Foundation’s efforts Michelle received two pro-bono corneal transplants.

Our Local Groups facilitate person-to-person exchange of information,and currently include Chicago, IL; NOVA (N. Virginia & the DC Metro areas): Saint Louis, MO; Dallas, TX; Chicago, IL and Southenr California. A group is starting up in the Boston/New England area.

To join our online community go to http://www.cornealdystrophyfoundation.org/jff/  Use this link to complete the Membership Application.  There we offer patients education needed to make informed medical decisions.

Support group members have access to a member recommended corneal specialists's list with about 500 surgeons in the USA and internatonally.

We host Corneal Dystrophy Conference and Symposiums for patients and their spouse/caregivers every two years where corneal researchers, geneticists and surgeon present information about the latest procedures for correcting these diseases, information about studies being conducted around the US, the latest genetic information relating to corneal dystrophies.

We distill the Symposium technical sessions into professionally edited DVD sets which are available for modest donations at http://www.cdfdvd.org

At our online support community we offer patients education needed to make informed medical decisions.   Many people with corneal dystrophyies email or call us for help.  We respond to them and often find a corneal specialist in their area on our list. 

If they are from another country, we utilize our network of corneal specialists to find someone they recommend in the client's country

We need more funds to expand our outreach to help the many others who are losing their sight through these pernicious genetic issues.