Cooley's Anemia Foundation, Inc.

CAF has been an amazing resource for my family and I. They really care about patient advocacy and spreading awareness about Thalassemia. They have been a great help in all of my relocations and connect me with doctors / Thalassemia peers.

Cooley's Anemia Foundation: A Lifeline for Families in Need

The Cooley's Anemia Foundation (CAF) has been an invaluable resource for my family and countless others navigating the challenges of living with thalassemia. As a community-focused organization, CAF not only provides critical information and support but also fosters a sense of belonging among families affected by this condition.

From the moment we reached out for help, the CAF team was there for us, guiding us through the complexities of treatment options, educational resources, and emotional support. Their comprehensive approach to problem-solving is a beacon of hope, ensuring that no family feels alone in this journey.

CAF also offers opportunities for families to connect with one another, creating a strong network of friends who understand our struggles and triumphs. Whether it’s through support groups, educational seminars, or family gatherings, the Foundation fosters a sense of community that has helped us build lasting relationships and find strength in shared experiences.

In a world where navigating health challenges can feel overwhelming, the Cooley's Anemia Foundation stands out as a reliable ally, offering not just resources, but genuine friendship and understanding. We are deeply grateful for their unwavering support and commitment to improving the lives of families like ours. Thank you, CAF, for being our problem solver, community resource, and a friend we can always rely on.

Thalassemia is a rare disease in the U.S., and resources for support can be scarce. The advocacy and support provided by the Cooley's Anemia Foundation, Inc. are truly exemplary. My family, along with many others, has found strength and hope through their efforts. Thanks to their dedication, we are better equipped to manage the challenges of living with a chronic disease and remain hopeful for a future cure.

CAF and staff are incredibly helpful and amazing. I've had to reach out to them several times in the past couple of years with questions or needs and they have always come through for my son. I would be so lost without their support and knowledge. I greatly appreciate all the efforts they put in for all the patients and families. THANK YOU CAF!!

My journey with the Cooley’s Anemia Foundation began about 4 years ago when my physician and her nurse introduced me to the foundation and a weekly support group for patients over 50. Since joining, I have gained so much insight from the Thursday night calls, which have become an invaluable source of knowledge and comfort. The shared experiences of others in my age group have given me new perspectives on managing life with thalassemia.

This summer, my wife and I had the wonderful opportunity to attend our first thalassemia family-patient conference in Atlanta. I was deeply moved by the experience of meeting other patients, making friends, and learning from the expert panels, many of whom were patients themselves.

The materials and information presented were relevant and could be applied immediately to my care. I found the session on managing transfusion therapy for thalassemia particularly valuable—it provided guidelines that I will continue to use as my go-to reference, especially when communicating with doctors unfamiliar with the disease.

Thank you for organizing these meaningful gatherings and for all the work you do to improve patients' lives like mine. The resources, support, and community you provide have made an incredible difference in my life. I am also thankful for the efforts CAF makes to push forward research, raise awareness, and build a future filled with hope for all of us affected by thalassemia.

Your unwavering dedication gives us all hope for a brighter future, and I am immensely grateful for the positive impact you have made in my life and the lives of so many others.

Sincerely,
Tom Somboonsong

The Cooley's Anemia Foundation has been a pillar of support and advancement for the thalassemia community for decades. Their unwavering dedication to improving the lives of individuals living with Cooley’s anemia is evident in every initiative they undertake, from patient advocacy to research funding. They consistently lead efforts to enhance patient care, spread awareness, and support groundbreaking research in the field of thalassemia.

Their recent conference in Atlanta serves as a perfect example of the foundation's impact. The event was a resounding success, bringing together experts, patients, and healthcare professionals to share the latest advancements in treatment and care. The foundation’s ability to organize such a dynamic, informative, and inclusive event is a testament to their leadership in the field. Sessions were not only packed with cutting-edge research but also tailored to address the day-to-day challenges faced by patients, making it clear that the foundation has the community’s well-being at the heart of its mission.

Beyond this, the Cooley's Anemia Foundation plays a critical role in funding vital research, providing educational resources, and fostering a supportive network for those affected by thalassemia. Their commitment to both the scientific and personal sides of patient care sets them apart. The Atlanta conference reinforced their position as a driving force in the fight against Cooley’s anemia, and I am confident they will continue to shape the future of care and treatment for this condition in USA.

Cooley’s Anemia Foundation has provided years of knowledge, support, and connections as we knew nothing about Beta Thalassemia and were adopting our daughter. The conferences mean so much to all of us. It’s such a strong community!

One of the best foundations I have ever been a part of. With kind staff and giving all of the important information necessary. I have been a part of this Cooley's Anemia foundation for approximately 10 years now and it has allowed me to learn so much about my illness and its where I get all of my information and share my experiences with others.
Craig, Eileen, Kathleen and everyone a part of this wonderful foundation have a wonderful part of my journey whether its sending them emails or asking them questions up front they have always answered all of my questions or have guided me to the right people. They along with our healthcare doctors and families are our SUPER HEROES!!
Maria and Sikandar

I've have great experiences with Cooley's Anemia Foundation for years. They have been helpful in difficult times with medical insurances and my appropriate treatments. They have connected me with plethora of resources to better understand my disease. They have went above and beyond advocating for patients. I owe many thanks to CAF! Thank you Eileen Scott and Craig Butler for everything they have done for me!

I am a person with thalassemia major. For the first 14 years of my life, I never met another person with my diagnosis. But when I moved to NY, my parents found the Cooley's Anemia Foundation and suddenly I was no longer alone. Not only did they introduce me to many patients, they also provided me with information about new treatments and connected me to experts in my diagnosis. I am so grateful to them for all that they do to support people with various forms of thalassemia. CAF is a small not for profit organization, yet despite it size, it does so much on a very small budget to improve the lives of people with thalassemia.

Great job coordinating the event in LA. My family learned a lot and we had a blast. Thank you for having us!

As a person with thalassemia, CAF has always been there to support me and my family with great research, incentive programs, and funding for education and wellness, as well as providing me the patient with the latest information on thalassemia and treatment protocols. CAF is not only leading the way in curative research but helps navigate the health care system and strives for a better quality of life for all its thalassemia family.

As a patient with transfusion dependent Thalassemia or Cooley's Anemia, the Cooley's Anemia Foundation has been a vital life-line for me and my family to navigate the challenges of this condition. Without them, this rare condition would not get the support it really needs. They connect patients with doctors and researchers at the forefront of the latest treatment options. From their conferences I often bring back new information for my local doctors. The conferences also help connect patients with other patients which is so necessary to understand how we can handle the real-life challenges. For decades, The Cooley's Anemia has been funding research for better treatment and a cure for this life-threatening illness, which is being realized right now. The best thing is, if patients have issues and challenges, The Cooley's Anemia Foundation is there to assist. They are just a phone call away. I am so grateful for their dedication to helping patients and families dealing this condition.

I can't say enough great things about Cooley's Anemia Foundation. They have provided an incredible community for patient support, education as well as friendship among Thalassemia patients. They truly care for each person that they meet, and I look forward to their annual conferences!

My family and I are very grateful for the Copley’s Anemia Foundation Inc. The Foundation has helped us find better care and options for our child health and has provided help and services for us with our journey.

CAF is a great support to my daughter, family and friends! We gain insight and education on important aspects of living with Beta Thalassemia Major and my daughter finds a community of friends and caregivers who remind her she is so very capable of pursuing a full life.

CAF connects patients and families to each other, funds research and is responsible for federal blood safety initiatives - to name a few. They are an amazing organization!

Cooleys Anemia Foundation has always and only helped my family. From pointing me to available resources to downright creative solutions to life and healthcare problems surrounding thalassemia, they've consistently been there in the 23 years of interaction with them. Anytime I or anyone in my support team needed, 5hey were the first stop to resolve issues or just a sympathetic ear to know that someone cares, understands and I'm not crazy.

CAF is an amazing organization that connects thalassemia patients connect with each other and with experts in the field. CAF provides great emotional, financial, and medical support that thalassemia patients would be lost without.

The Cooley’s Anemia Foundation is a remarkable organization of dedicated and caring individuals who work tirelessly and diligently to help find a cure for Thalassemia. I have witnessed firsthand the abundance of support and information given to patients and their families regarding the crucial, life-sustaining steps that must be followed in order to stay healthy. It is truly amazing! I am beyond honored to continue to support this wonderful organization!

This is a great non profit organization and the members are very helpful. I’ve reached out to them a few times and they have been on top of my concerns.

Every element that renders a foundation truly a foundation is embodied by The Cooley's Anemia Foundation. This foundation truly makes a difference in the lives of patients who live with Cooley's Anemia, regardless of what the age group may be. Not only is this foundation there for their patients, but also for the patient's whole family unit. I am very grateful for this foundation and the assistance that they have provided throughout the years.

They are very -very helpful. They have always guided patient and their families. It is a true patient service-oriented organization.

We are lucky to have an organization like this for providing updated information about Thalassemia to the patient .

Great team of management and volunteers!!

The best and most compassionate nonprofit I've experienced!

CAF gave me a network to speak to about all my health questions. There were times I felt alone and didn't know who to ask about questions. CAF gave me a supportive network of fellow patients to ask about all my health concerns. It helped give me a scholarship to fund my PhD. I am so thankful for this amazing organization! I can't imagine my life without it.

I cannot thank Cooley’s enough for every thing that they do. They go above and beyond to make sure we have the resources and information available.

CAF goes above & beyond for people living with thalassemia and their families. Knowing we have their support & access to the latest information makes our journey for our daughter’s care so much better. The annual CAF patient & family conference has been a game changer for us! The opportunity to gather with other families is life giving and the speakers and breakout sessions have significantly equipped us with in-depth information.

Such a great organization and probably the only major one in the United States for patients suffering from thalassemia and thalassemia related blood disorders. They help so many patients and families with their work and should be recognized!

The Cooley's Anemia Foundation, Inc truly wants to treat the entire patient. They provide support for mental, physical and emotional health and everything in between. They are quick to respond to calls or emails. The foundation stays up to date on all of the current treatments and ongoing medical trials for thalassemia related illnesses. If you or a family member has thalssemia, it is a great organization to be affiliated with to get help and support for all matters relating to this disease.

The Cooley's Anemia Foundation, Inc. is an incredible resource for American thalassemia patients and families. They have personally helped me find resources for care, understand confusing policies, and given me hope when I'd lost much of it. I love the people who work there and am very appreciative of their dedication, service and compassion.

As a patient of thalassemia major, I believe that cooley’s anemia foundation has done many things that only families can do. They helped us to understand the importance of how we can overcome the hurdles of being anemic and still live normal life. The conferences that I attended every year taught me a lot about ongoing new researches .
This nonprofit organization has helped me a lot personally. I will always be thankful to it and it’s hardworking and awesome team.

CAF has been a second family to me. I’ve had their support since I was 16 years old and now I am an adult with living a healthy life. My family moved to the States without proper education and knowledge about how the health system worked here. The support system and friends from CAF gave us the fighting chance to overcome big obstacles and challenges. CAF has created a fantastic way of educating families and patients of all ages with Thalassemia. CAF has always been there for me and I will always be there for CAF ! :)

I have had the best experience since day 1 of knowing Cooley’s anemia. They are always helpful and support all the patients and their family provide us with all the information and updates with the latest medication, trials, and all the newest study. And also they try their best to support all the patients and their family to be together at the conference. Thank you Cooley’s anemia for being their for us.

Cooley's Anemia Foundation and the individuals behind the foundation are very supportive and kind. This foundation has helped many patients myself included. I have been able to volunteer at the care-walks and have had the opportunity to attend conferences as a patient. Through the conferences I have learned to advocate for myself and connect with the many doctors that presented in the conferences and this has only been possible because of Cooley's Anemia. Craig and Eileen have been so amazing with answering all of my questions and guiding me to all of the right people such has healthcare physicians to seek further guidance. There is so much more to say, but I think even that would not be enough. They have helped us patient soar and gave us our wings to help set our own care-walks and become self advocates and to be able to learn from other patients. I am truly so grateful for Cooley's Anemia. Thank you Cooley's!!!

From my initial diagnosis of Thalassemia as a young child, the Cooley's Anemia Foundation has been a constant in my life. Through the foundation, I was able to meet other patients who became mentors to me. I also started to receive a steady flow of medical information to keep me up to date on standards of care and emerging therapies. 30 years later, I still rely on the Foundation for important information about my diagnosis. My health outcome would not have been as positive if it was not for the Cooley's Anemia Foundation.

I can’t say enough about Cooley’s and the people who work and volunteer for us. They do great job of keeping us informed and educated. Best part is meeting other families so we can share stories and resolve problems with medical care. Thank for being there for my family!

1959HOPE - That is the Cooley's Anemia Foundation -1959 our First son was born with Cooley's anemia -a fatal genic blood disorder unheard of since it was considered rare, meaning it was seldom diagnosed and children died within the 10 yers of their lives.
But, there was in existence a small Foundation in Brooklyn . Our doctor , fortunately , told us about it .My wife located a telephone number for the Foundation called a spoke the President who had two children with the disorder . They spoke well over two hours about the work of this small Foundation was doing in helping the children , parents and supporting " research " for a cure .
The conversation ended with "hope".
Hope gave us strength .
The Cooley's Anemia Foundation is Hope .

Cooley is a Good organization educating parents on Thalassemia

We have 3 children with Beta Thalassemia Major. Cooley's Anemia Foundation has been a key resource in the guidance of care for our children. Additionally, they host an annual CAF conference for patients and their families that not only provides the most relevant and up to date information, but also connects us with other families living with Beta Thalassemia.

They help patients and parents as well as the medical community with aggregating massive amounts of information and relaying it in easily understandable parts.

The Cooley’s Anemia Foundation has been a valuable resource for our family. We have two adult daughters living with thalassemia. CAF has provided important information through their website, conferences, etc. connecting people with thalassemia to each other, to updates on treatments, medical advancements, and, most importantly; just having someone to talk to about issues and concerns is such a lifeline. As our daughters grew and went off to college and beyond, CAF has been such a resource for doctors, insurance, and other healthcare questions that have arisen as our girls have moved to different states. I would like to acknowledge, in particular, Eileen Scott, patient services manager. She has been an invaluable resource for our family. It is a blessing to know that if we have a question or concern, Eileen and CAF are there to help.

The Cooley’s Anemia Foundation is a true lifeline for many Thalassemia patients and their families. This foundation provides the most current information for patients that might not have regular access to Thalassemia experts and any new advancements in the treatment of this disease. One of the most important functions of the foundation is the wealth of knowledge and hope that they are able to share with parents of newly diagnosed children. The gratitude of these parents and the patients lasts a lifetime.

The foundation’s annual patient/family conference is a unique event that brings patients and their families from all over the country to be to together to learn from each other and hear medical experts speak on the disease. Many patients are assisted financially to attend this conference, thanks to the fundraising efforts of the CAF.

The CAF is a small organization that has made a large impact on a countless number of lives.

A family member was diagnosed at a very young age with Cooleys Anemia. I have been to multiple functions to support this cause and the foundation. It is made up of very caring people who provide information, comfort or whatever you need. They have made a lot of progress fighting this disease but there is much more to be done. Please support this foundation. Thank you

CAF has been great. I've learned so much about my daughters condition from CAF. They help with the financial burden of this condition and they provide so much resources to its members. They advocate for the patients and provide us with ways to navigate the bureaucracy of the medical world.

I have been associated with the Cooley's Anemia Foundation since around 1968. The wonderful people there have always helped me with anything I needed such as supplies and especially the moral support needed when living with Thalassemia. We are so grateful to have them and they are family to me. Much thanks to Eileen Scott, for always being there for me.
I will always remember all the wonderful special people that we lost over the years to the disease

They have always been amazing at providing me with support regarding my illness. They always respond immediately and they are so knowledgeable that I trust them more than I even trust my doctors.

Cooley's Anemia Foundation (CAF) is a really great organization. When my daughter was diagnosed, we were completely heartbroken. CAF was there beside us, guiding us & educating us on the best way to deal with it & how to take care of our daughter. The regular treatment updates, their newsletter showcasing successful patient stories, their help with visiting a Thalassemia center of Excellence all of these helps patients & their families a lot and makes them know they are not alone in this road. I am happy to give vouch for the kindness & support CAF provides to Thallasemia patients and families.

We’ve been corresponding with the Cooley’s Anemia Foundation for almost 12 years. My son is 11 years old now and he was diagnosed with Thalassemia Major in utero.
They are so compassionate and helpful. Their conferences are so informative, and fun for the children. (And adults too) We’re very grateful to have such a wonderful foundation in our lives.
Thank you,
Carly Bean, Bill and Harrison Parks

This organization is a wealth of information for all concerned with gaining knowledge of the disease Thalassemia. Kind, understanding and all inclusive are hallmarks of this organization.

Cooley's Anemia Foundation is wonderful! They have been a great source of support to our family as we adopted a child with this disease. They are always there to answer questions, help navigate insurance challenges, and provide support so we can find the very best care for our son.