As a parent of young child with CHM I felt so alone in the beginning unsure how to navigate this new journey. Once I found the CRF I met this incredible family, that has given us so much love, support and Hope. This organization has some of the strongest and bravest individuals I have ever met. I am truely honored to know them and consider each of them as lifetime friends! There are not enough words to express just how thankful I am for the CRF!
My first introduction to the CRF was at the Chicago Conference in 2006. Since my experience at that conference, I felt accepted, understood, and included. I was not alone facing a rare eye disease that was stealing my vision, I was now part of something bigger. The CRF helped to bring me from a place where I was facing CHM alone into a family that was there to help. The CRF is more than a group of CHMers getting together to raise money for research, it's also a family that provides support, advocacy, and hope. I have had the privilege of watching the CRF grow over the years, and each time we get together at a conference, we get bigger and stronger. There is great strength in a group of individuals getting together for a common purpose. As a CHMer, you are 1 in 50,000. With the CRF, you are a part of an international organization that was formed to help. This incredible group of individuals has taken our cause to a whole new level, and we have already taken huge steps in the right direction. It has gone from "sorry there is nothing that can be done for you" to ground-breaking research that brings us closer to a cure each day! It's great to be a part of it!
The CRF has been life-changing for me and my battle with vision loss. These people have become my Global family, helping me to learn how to cope, to gain a greater understanding of what CHM parents go through and helping me learn how to thrive in my day-to-day life.
The rarity of CHM can be isolating to those affected. The CRF has provided a portal to CHMERS from across the globe and formed a powerful force for support and to drive research!
The CRF is a group of ordinary people with extraordinary passion, drive and hope that has worked tirelessly to find a treatment to slow down the progression or cure CHM. During my tenure in the last 10 years, CRF has dedicated its resources to find the best & brightest researchers, clinicians and institutions in RDD to help us reach our goals and fulfill our mission, while maintaining a small family-feel when supporting, educating and caring deeply for one another.
This unique group has become my dearest band of friends and go-to patient advocates. Because of the dedication given so freely by many, I'm confident that a treatment/cure is in our near future!
The Choroideremia Research Foundation is an amazing group, dedicated to pushing research forward to find a treatment and/or cure for Choroideremia. I found the CRF through an internet search 15 years ago, and they have been such a huge support over the years. Because of the CRF, we now have hope for a much brighter future WITHOUT Choroideremia!
At the age of 27, I was diagnosed with CHM and told I would go completely blind and told there would never be a treatment. Now, at the age of 53...after 10 marathons, numerous speeches and fundraisers netting over $200,000, and serving on the Board of Directors and the Executive Committee of the CRF, there are several Clinical Trials happening and treatment is close. Most of the heavy lifting of the CRF is done by a small # of close-nit, kind and hard working people. I am proud to be a part of such a group!
When the Choroideremia Research Foundation was first created by a group of individuals who lamented that there was no active research in treating our disease, they wanted to change our disease community's lack of hope. Were it not for their advocacy and funding of research, we likely would be decades behind. With multiple novel treatments in trial, hope abounds for ourselves and our children and grandchildren. They represent more than a disease community; they represent hope, and have real results to show delivery on that promise. That hope has kept me going and invigorates me to share that hope with others.
This small Foundation has done very big thing! There was no research being conducted on Choroideremia in 2000. Now, people with CHM are having their sight saved with gene therapy trials, including me! I cannot thank the hard working members of the CRF for making this happen!