My Nonprofit Reviews

julie22 - charity reviews, charity ratings, best charities, best nonprofits, search nonprofits

julie22

153 profile views
1 reviews

Review for Discovery Eye Foundation, Cerritos, CA, USA

Rating: 5 stars  

I am 23, and was diagnosed at age 17 with Keratoconus, a degenerative disease of the cornea which causes poor vision and makes vision correction with glasses and contacts very difficult. It is the number one reason people have cornea transplants in the United States. At the time when I was diagnosed the optometrist knew very little about my disease (occurs in 1 out of 2,000 people) and made me scared. The first thing I did was go home and look up the disease and I found the website for this organization. They were and continue to be the best resource for people like myself looking for resources, information, and support. This past weekend, (June 2010) I attended a conference hosted by Discovery Eye and National Keratoconus Foundation. The conference was free to attend and had many of the top doctors in the world, speak. After six years of living in fear that I would not have option as my disease gets worse, I am finally at peace. I now know what my options are and what is currently in the research stage. I was also able to meet (for the first time) other people who have KC, which was amazing. Something else worth noting is the email discussion forum hosted via this organization. Patients are able to communicate with other people who have KC as they search for answers. This provides a great sense of community and is an amazing resource. I cannot express how thankful I am for this service alone. I highly recommend the National Keratoconus Foundation to all. *Please forgive any errors in this review. It is not easy for me to see the computer screen clearly.

What I've enjoyed the most about my experience with this nonprofit is...

the Orange County Eye Symposium.

The kinds of staff and volunteers that I met were...

very knowledgeable, friendly, and helpful.

If this organization had 10 million bucks, it could...

make me cry! Well this sentence almost did. The organization could fun more research, provide more information to people suffering from this disease, and help people afford access to the VERY expensive treatments for KC.

Ways to make it better...

they could afford to host more events, help fund research. This is all due to lack of resources though, not their end.

In my opinion, the biggest challenges facing this organization are...

the fact that very people know about Keratoconus and even if they do people have a difficult time understanding how difficult it can make life.

One thing I'd also say is that...

I am so thankful that I found this organization.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

Role:  Client Served & I have Keratoconus.