I knew CRF from my ophthalmologist, and for the first time in mt life, it has brought me hope about my eye disease. One of the founders talked to me by messages and explained what the foundation has been doing for the last years, like raise funds for research. They helped me to understand more about my condition and what was happening in the world about research, and, fortunately, the news were good. The relationship with the CRF community is so healthy, and I feel so grateful to have had the opportunity to meet them.
CRF is a great organization to be part of and support. I am the mother of two sons with Choroideremia. The CRF is a great support network and is funding amazing research grants in an effort to find a cure for this disease .
This organization welcomed me when I knew little about our problem. We are able to call or email officers and get answers asap.
staff helps with all questions from science to fundraising. CRM has meetings online or in person to keep us involved and.
The research folks are patient with the questions of lay folks and stay with us for the long haul. They answer questions quickly and in a kind and knowledgeable. way, and find ways to raise money to find a cure. I have made lifelong friends in this organization and learned much from the scientists and members
Such an inspiration this organization is in their dedication to cure a rare retinal disease. I never believed that I could do something to change the outlook for people who inherit this disease that causes blindness. A small group of people formed the foundation 20 years ago and raised money and connected scientists. They are a great resource for the families who might have never met someone with their disease. Many lifetime friendships are made through CRF as we work together to raise funds for the research. The doctors and scientists that work on CHM attend our conventions and share their input.
The CRF has been a huge source of support for my family as we navigate through life with CHM. I appreciate the focus on funding important research in seeking a cure!
Several years ago a lightning bolt struck my family out of the bright blue sky. My adolescent son, with perfect 20/20 vision was diagnosed with an extremely rare genetic condition that will ultimately take his sight. We were then, and to this day continue to remain, in a state of utter disbelief. Gratefully, we were warmly welcomed into the Choroideremia Research Foundation. This wonderful organization help provide us with information, support, and resources. Importantly, as a family we have been able to raise money and awareness. By doing so, it helps up feel like we are contributing to help my son. Incidentally, we now know that another one of our sons is affect and one of our daughters is a carrier.
I can't say enough about the wonderful women and men of the Choroideremia Research Foundation. They have been inspirational and life transforming.
The CRF plays a leading role in fundraising, advocacy, research grant funding, and patient support for Choroideremia. This organization started off as a small group of affected patients, and over the past 20 years has continued to expand and grow. The CRF is a beacon of hope for those suffering from this very rare eye disease. In the past, a cure was a dream, however, we are now making that dream a reality!
CRF offers fantastic support to those who have Choroideremia as well as their families and friends. They provide up to date information about the condition including new research findings. They arrange meetings and conferences. This support is invaluable. My two boys have this condition and really appreciate the support they receive from the CRF.
This organization can be considered a model for nonprofit organizations. It is transparent, honest, and truly dedicated to the cause: curing Choroideremia by helping to fund the research and treatment and bringing awareness to blindness caused by CHM! All collected funds get to straight to the research and are effecting the treatment. "Vision in sight!"
I am a member of the CRF and they have helped myself, my family and my friends all cope with the horrors of the possibility of going blind. The CRF is a huge family to me and I don’t know where I’d be without them.
CRF has been life-line for me, over 20 year's in the making. This unique foundation provides resources and ongoing learning opportunities for people, like me, who live with choroideremia. But most importantly, it creates a sense of community which is very much needed. There's only an estimated 6,000 people in the US with this disease, so I always felt isolated no knowing anyone who could relate to my experience. That all changed when I discovered CRF and why I immediately raised my hand to volunteer.
The Choroideremia Research Foundation has done, and continues to do, amazing work to increase research for a rare genetic disease. The CRF has also created a sense of community among those with the disease and other who are passionate about finding a cure.
The CRF is a wonderful organization that responsibly funds research and supports the community of people affected by Choroideremia.
CRF is a great source of information about Choroideremia for affected individuals and their families.
In its twenty-year history, the Choroideremia Research Foundation has evolved from a fledgling group of patient-advocates to a successful originator and funder of advanced treatments for the eponymous disease. Its international board and membership interact daily with professional staff and the medical research community. The Foundation successfully raises funds and cooperates with public and private partners in pursuit of its mission, which is nothing less than the eradication of this destructive blinding condition. It is a pleasure to work with. It has given hope to many families, including my own.
I have been with the CRF for around a decade. The impact they have had on myself and my family is immeasurable, and have allowed for a new chapter in my life to be written that I never thought possible.
10 out of 10! Bar none the best NPO I have ever interacted with!
Superlative staff and fantastic leadership!
While The CRF is a small nonprofit, it has had an oversized impact. It made key investments in treatments for Choroideremia and other blinding diseases decades ago. Those investments are now paying off with treatments that are showing incredible promise. In fact, 3 treatments for a single rare disease are now in human clinical trials. And while this is amazing for those affected by Choroideremia, the work holds immense promise for all blinding diseases, and genetic treatments for many other types of rare diseases.
When you donate to the CRF you are making a strategic bet that they will continue to use their resources wisely and have an outsized impact.
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!
This is a family and a very motivated one. They are focused on raising money for research into choroideremia and better understanding the disease in order to help patients and their families.
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!