CRF is a fantastic organization for both research and community-building for those living with Choroideremia. They are truly passionate about their mission and bring so much hope to families who need it.
CRF is truly focused on finding a care for Choroideremia patients. It explores all possible avenues to find a cure. CRF is also so engaging with not only those with Chroideremia, but also their family members. Choroideremia presents many challenges for patients, and CRF helps greatly to support.
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CRF is such a great organization! They've created a wonderful community among patients and family members of patients. The communication is fantastic. It's obvious CRF is focused on a cure and engaging its members along the journey to the cure!
From a father of a CHM son, we have been apart of CRF since the inception and so proud of how it has grown and progressed. Brings hope to a horrible genetic defect. We have gone from a baby to a young married man with his own son and family with hopes and dreams. We are excited for a future that includes sight for him and for those that are not yet born. Please keep this dream alive.
The CRF provides the support we need as patients while driving towards a cure. It’s our voice for advocacy and fundraising to cure CHM.
As the co-treasurer of the CRF, I am proud to offer my enthusiastic endorsement. This organization has consistently demonstrated unparalleled commitment to advancing research for CHM. Its strategic financial management and transparent practices ensure that every dollar is maximally effective in driving groundbreaking research and supporting vital initiatives. Their meticulous approach to funding allocation, combined with their unwavering focus on their mission, makes them a standout leader in the field. I wholeheartedly recommend
The Choroideremia Research Foundation for anyone looking to support transformative work in eye disease research, particularly in the CHM area.
I am 23 years old, Ukraine, and I am the first and only case in Ukraine with genetically confirmed choroideremia. I found myself alone, without information, like on a deserted island in the 21st century. It has already been 1 year since I found out about my diagnosis. During this year I lost my house due to shelling, my grandparents died from shrapnel injuries, and I lost hope for the future. But on 05.08.2023 I was found by Cory Macdonald from CRF, I received my first letter from him. A man with a cane found me-a needle in a haystack on another continent. 05.08.2023 was the day I came back to life, I have hope. I am not alone and I have someone to talk to about this! I am grateful to CRF for the support of PRO RETINA from Germany, the Choroideremia Association from France! The new information I have received from them at congresses over the last year I have passed on to our ophthalmologists and this is very important. CFR has become a straw for me to hold on to in my life! 4 other people from the former USSR, whom I found on the Internet, began to hold on to this straw. They didn't know CRF existed, we were warmly welcomed in a WhatsApp group. I no longer start every morning with a war news feed, but with the CRF WhatsApp group. A 39-year-old guy told me that hope came with me. Although a year ago, I myself couldn't breathe from helplessness. CFR gives a person a ground under their feet!Any question is answered immediately, researchers Robert MacLaren, Mariya Moosajee, Ian MacDonald and others answer letters with attention and understanding. Many thanks to them! The CRF staff are professionals at what they do. For us, СRF is not just the best non-profit organization, but a Transatlantic Organization with a humanitarian mission!
The personal outreach from CRF is second to none. The information, commitment to using funds for research, and support is excellent and uplifting. The board members I have connected with are generous with their time and a pleasure to work with.
As a board director of the Choroideremia Research Foundation (CRF), I am immensely proud to be part of an organization that is making a significant impact in the fight against choroideremia, a rare genetic retinal disease. CRF is dedicated to funding and coordinating innovative research projects that aim to find effective treatments and, ultimately, a cure for this condition.
One of the hallmarks of CRF's excellence is its strategic investment in cutting-edge research. By supporting a diverse array of scientific endeavors, from foundational studies to advanced clinical trials, the foundation ensures a comprehensive approach to tackling choroideremia. This not only accelerates the pace of discovery but also broadens the scientific community's understanding of the disease, laying the groundwork for future breakthroughs.
In addition to its research initiatives, CRF is deeply committed to supporting patients and their families. The foundation provides invaluable resources that help families navigate the complexities of living with choroideremia. From offering the latest information on research progress to creating a supportive community network, CRF stands as a pillar of hope and assistance for those affected by this condition.
CRF's outreach and advocacy efforts are equally commendable. By raising awareness about choroideremia and advocating for greater research funding, the foundation ensures that this rare disease remains a priority within the medical and scientific communities. Their fundraising events not only generate essential financial support but also foster a sense of unity and purpose among patients, families, and researchers.
The foundation's success is driven by the dedication and passion of its board, staff, and volunteers. Each member of the CRF community is committed to the mission of finding a cure for this condition and improving the lives of those impacted by the disease. This collective dedication is evident in every aspect of the foundation's work. It is an honor to serve on the board of such a transformative and impactful organization.
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The CRF has been relentlessly committed to raise funds, promote and support research on Choroideremia, a condition for which there is no effective treatment currently available.
The foundation is playing a crucial role coordinating and funding numerous research initiatives considering a wide range of scientific approaches. This work is helping to bring closer the day for a cure.
Also it has been a primary reference for patients, their families and the community to understand better this retinal disease and guide them from choosing the best diagnosis methods to clinical trials engagement.
The website and its YouTube channel constitute a precious source of information for the people affected with this condition, the general public and researchers:
https://www.curechm.org/
https://youtube.com/@curechm
It is a privilege and a life motivation to have the opportunity to contribute to its mission and to be part of such a dedicated and inspirational team.
CRF has been very helpful to us as a family. It's a great resource. They provide support and guidance.
Among the scores of nonprofit groups I've worked with professionally, CRF stands out as truly volunteer-driven and deeply engaged with its constituencies and their communities. The level of genuine constituent engagement that CRF has achieved is, I believe, the foundation for their success. All in all, CRF is an absolute standout in the nonprofit sector.
The CRF does a great job with patient support, advocacy, and fundraising to find a cure for CHM! This organization is the voice for all patients with this rare condition.
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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 a huge support for my family as we navigate living with choroideremia. I have been honored to serve on their Board and hope to continue being involved for years to come.
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CRF is our new family. When our son got diagnosed with Choroideremia, a rare inherited retinal disease, we were devastated. We reached out to CRF and within a few days, we were welcome on the phone, WhatsApp and Facebook by one of the founders and a few other active parents. We also quickly met CRF Executive Director and then got the opportunity to apply and become a board member. From day 1, we've been supported, informed, and encouraged to be active and not take our condition as a tragedy. Being part of CRF helps us be part of the solution.
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Our 13 yrs old son got diagnosed with CHM last December and the news was quite brutal for our family. Thankfully we were told to connect with CRF and got immediately connected to the wonderful people in the community vais Facebook and WhatsApp. A few hours later, we received messages of CRF people offering to call us. Our first call with Cory lasted over an hour filled with compassion, information on the decease, the progress in science and some humor. It helped us look at our son’s situation with clarity, love and hope. Since then, we’ve been participating to CRF parents support and “meet the researchers” sessions. Every time we asked for help or if we can participate, we are always welcomed with open arms and answers. We feel very much to have found the CRF community and feel part of a family. Very grateful
Without a doubt, I am not aware of a non profit that gives more of their funds raised towards targetted research to find a treatment for their condition.
Beyond research funding, CRF provides extensive outreach to those with Choroideremia and their families.
Donating to CRF makes you feel like you are joining a family!
Getting a CHM diagnosis and living with that diagnosis can be life-changing. The CRF has helped me and many others turned away from despair and learn not only how to cope, but to thrive as an individual with Chm. I realize I am part of a global CHM family. Together, we have become a huge resource I support and in giving hope I funding the much-needed research for treatment/therapy.
CRF is a great organization. They are highly active and engage with the top researchers around the world to support research on Choroideremia. They also provide great support to their members including information, education, and support. I strongly recommend this organization.
This non profit benefits professionals and patients across the world. It has a tremendous Global impact.
This is a very active charity - they have several events a year to raise awareness for a debilitating visual impairment. Funds collected at charity events go to support research and researchers (particularly new-emerging or early career researchers).
choroideremia Research Foundation is a great NGO that supports a community who are connected by a rare inherited ocular condition. I always feel the reason for choroideremia to be one of the most extensively studied inherited retinal dystrophies is primarily the existence of CRF. I hold a very high opinion of the work they have done and their vision for the future. They united all the people who are related to this rare condition, and all the people who care about the well-being of choroideremia patients. The organization is also very well-ran and has always been supported by multiple experts in the field.
Great group to financially support and be a part of. The CRF is doing amazing things in its research projects and supporting is members.
Come join us!
CRF is a fantastic organization. I know them from the research side- they have funded my work on understanding choroideremia and what goes wrong in retina cells. They do a great job of bringing scientists together to create a community committed to advancing our understanding of this disease and developing new treatments.
Choroideremia research foundation supports research in this field. I feel heard and supported with my research. It provides great opportunities for researchers as well as those affected.
CRF is a wonderful, supportive organization for my family, who heavily affected with Choroideremia in two generations. They have provided all the support, resources and updated information to help us look forward to the future finding a cure. We'd be so very lost without them.
I am an ophthalmology researcher from Australia, and interact with CRF on a number of levels. It is truly a fantastic organization, led by passionate, well-informed and amazing people. We have been funded in the past by CRF, and are working on a project to learn more about female carriers of choroideremia (an often neglected group). I can attest that the funding people donate goes to incredibly impactful research, globally, in the race to find new information and treatments about this condition. Thank you, CRF!
CRF is an outstanding organization with wonderful leadership. They have helped us navigate our way from day 1 of my oldest sons diagnosis. We now have 2 affected sons and have so much appreciation for the information and support.
The Choroideremia Research Foundation hosts informative and engaging talks for general audiences that give hope to families. They not only conduct research aimed at curing blindness, but for all people affected by this disease, they offer encouragement, support, and community.
CRF is an outstanding organization that I am delighted to support. As the father of a child afflicted with Choroideremia, CRF is a resource I rely upon to keep myself up-to-date on the latest developments relating to the disease, and to connect with a community of similarly situated parents who share many of my thoughts and concerns. CRF provides hope to so, so many families, hope that we will one day find a way to bring sight to the lives of those facing not simply the stubborn, creeping darkness of the disease, but the despair and alienation that tends to accompany significant vision loss. If you can, please support its mission.
CRF has a great team of dedicated staff and volunteers and does such important work toward ending CHM and funding research that will help many kinds of vision loss.
This non profit is a true example of how things should look like. It’s a small but smart and strong foundation.
Every dollar from a donation is invested in the most useful and precise way in order to move forward to the ultimate goal- to find a treatment. That’s why their impact on people and on the research field is a million times bigger than it’s
size!
I am so grateful to have this foundation in my family life! They have a fantastic leadership, amazing availability, the highest bar of academic and professionalism. I’m an aunt of a little boy just diagnosed with choroidermia and I can’t even start to describe the positive impact it’s having on his parents and the hall family! Absolutely amazing!
Choroideremia Research Foundation has been an invaluable resource for my family for many years. As the mother of a son who is losing his vision, I often turn to CRF for reliable information, support, or advice. The foundation is well-organized, with strong, enlightened leadership. It is accessible and "friendly," in their outreach, while being run very efficiently. Perhaps the best part is the way they bring together people in the Choroideremia family and advocate for ongoing research to cure this discouraging condition.
A passionate charity for supporting. The family and individuals of those with choroideremia. Friendly and compassionate members providing information to those of us around the world
This foundation is a true inspiration! A story about how few patients rose one day and decided they are working together for a joint cause- supporting people with a terrible and rare blinding disease, fighting to find a cure, act as a unit! They are doing all of that in a professional, sensitive, educational and amazing way.
My son got diagnosed with choroideremia. We never even heard about this disease. We were in a complete shock and terror. We Googled the term and found this foundation, sent a message and thought maybe they will come back to us in a week or two. After 5 minutes my phone rang, from the other side of the world a foundation representative called me and spent more than an hour talking to me, giving me all the information there is about this condition. This phone call, and many else to follow, was like a saving boat to me, giving me hope. I never heard of a foundation like that, a true family!
Imagine if the earth would have open it’s mouth and you would fall right through it. This is how I felt when I found out that my son has a devastating eye condition eventually will cause blindness. Imagine how I felt when I discovered that this gene passed through me without even knowing about it. The only ray of light in this situation is the choroideremia non profit foundation with their dedication to find a cure and their dedication to the patients all over the world. I have not enough words to thank this foundation and describes their impact on our life.
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.
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 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!
Amazing organization!
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!
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!