About

The Corneal Dystrophy Foundation started in 1998 as a private grass-roots patient to patient online support group (called Fuchs’ Friends) to exchange knowledge about the genetic and practical issues patients have with corneal dystrophies. It continued to grow and currently encompasses people in over 180 countries with a sustaining membership of approximately 4000.

Who we are

The Corneal Dystrophy Foundation is a 501c3 organization made up of caring, giving people whose lives have been impacted by a corneal disease. This disease has the potential to render them blind without the medical intervention of wonderful doctors.

We are so grateful for the opportunity to restore our vision and improve our own lives that we must tell others about the work that has been done, the advancements that have been and are being made to allow others the same opportunity.

What we do

• Research by finding the latest technological advances and then sharing them via social media.
• Provide a secure support group website for those hoping to learn about all aspects of corneal dystrophies with access to moderators to help answer questions.
• Compose written educational materials and newsletters.
• Organize webinars with experts in the field of Corneal Dystrophies. These meetings are open to all interested parties
• Sponsor regular geographical meetings for local groups to share and learn from each other.
• Assist those less fortunate in finding ways to procure needed services.
• Maintain and finance a website with extensive information and materials about Corneal Dystrophies

Our reach is worldwide: 180 Countries in 116 languages.

Why we do it

The people involved with The Corneal Dystrophy Foundation know and understand the feelings of helplessness and hopelessness when first diagnosed.

We are driven by the need to share what we have learned. We do so by ensuring that others are well educated about the condition they have; by showing them how to find well qualified doctors and appropriate medical service; and by giving them the encouragement they need to receive the best results possible.

How We Provide Support

The Corneal Dystrophy Foundation provides support and information for individuals and families with a corneal dystrophy. We do this through several channels in addition to this website:

• The Fuchs Friends® online support group
• Facebook
• Twitter
• Local Support Group Meetings
• Free Literature
• Webinars

Mission/Values

The mission of The Corneal Dystrophy foundation is to give hope through education and support.

Our values are:

• Education – Education empowers people to make informed decisions.
• Responsiveness – This organization is committed to quickly respond to inquiries from people in need of support or education about corneal dystrophy.
• Advocacy – On behalf of those with corneal dystrophies, we actively advocate for recognition of their special medical and visual needs with:
  • Medical providers
  • Insurance companies
  • Federal and State Governments
• Collaboration – We strive to encourage collaboration with and between professionals in the several disciplines germane to corneal dystrophies to cross fertilize their individual efforts by sharing.
• Respect – We promise to respectfully work with each individual who needs our services.
• Innovation – We constantly research new and innovative methods of providing education and support to those needing our help.
• Integrity – Whistleblower Policy
• Public Accountability – Disclosure of Conflicts of Interest

What and Why?

The Corneal Dystrophy Foundation is a 501c3 organization made up of caring, giving people whose lives have been impacted by a corneal disease.

We are so grateful for the opportunity we received to restore our vision and improve our own lives that we must share our experiences and knowledge and, thereby, allow others the same opportunity.

Our Volunteer History

“Meet Bob Beliizzi and Dorothy Action”

October 1998 – Dorothy Acton was diagnosed with Fuchs’ Dystrophy

November 1998 – Bob Bellizzi was also diagnosed with Fuchs’ Dystrophy

April 1999 – Each starts their own website about this genetic disease and fill viewers with information about Fuchs’

June 1999 – Bob and Dorothy connect and start the e-Circles group, an email list group where everyone gets a copy of each email that any member sends.

October 1999 – E-Circles was acquired by E-Groups who was then acquired by Yahoo Groups.  The next move was to take the forums to service, Groups.io, where we are today. Since then we have grown rapidly and have logged over two million messages of support, help and knowledge to each other not to mention our success stories.

April 2004 – It became obvious that we needed to secure funding sources.

Dorothy and Bob could no longer to afford to pay all of the costs.  We started to work on the Foundation, incorporating in California and started the tremendous task of documenting and applying for an IRS 501C(3) Tax Exempt Status and a California Tax Exempt Status.  This was approved in 2004.

We celebrate over 20 years as a nonprofit foundation.  A true success story.