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Cooley's Anemia Foundation, Inc.

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Health, Specifically Named Diseases

Mission: The Cooley’s Anemia Foundation (CAF) was founded in 1954 by dedicated parents of afflicted children, many of whom remain involved as members of the Foundation’s governing body. At CAF’s inception, children with thalassemia were confined to hospital care and barely survived their first decade of life. CAF’s legislative and research efforts helped pave the way for improved quality of life and longer life expectancy. CAF is dedicated to serving people afflicted with various forms of thalassemia, most notably the major form of this genetic blood disease, Cooley’s anemia/thalassemia major. Our mission is advancing the treatment and cure for this fatal blood disease, enhancing the quality of life of patients and educating the medical profession, trait carriers and the public about Cooley’s anemia/thalassemia major.

Target demographics: The Cooley’s Anemia Foundation is dedicated to serving people afflicted with various forms of thalassemia, most notably the major form of this genetic blood disease, Cooley’s Anemia/Thalassemia Major.

Direct beneficiaries per year: Patients in the US

Geographic areas served: US

Programs: Research grants - payments for medical research to enhance knowledge in treatment and eventual cure.

public information - general information for the general public: films, brochures, and legislative symposium for the medical profession.

Community Stories

25 Stories from Volunteers, Donors & Supporters

Client Served

Rating: 5

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.

1

General Member of the Public

Rating: 5

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 ! :)

1

General Member of the Public

Rating: 5

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.

1

Volunteer

Rating: 5

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!!!

1

Client Served

Rating: 5

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.

Gee C.

Client Served

Rating: 5

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!

JillMD71

General Member of the Public

Rating: 5

I cannot begin to express the gratitude I have this organization. The support they have provided to my daughters and myself has been amazing. From being sure we can attend conferences, to assistance with appointments at a comprehensive care center. The educational material and quick responses to questions goes above and beyond!

Previous Stories
1

Donor

Rating: 5

I cannot say enough positive words to describe CAF. They are a nonprofit that cares so very deeply and are always a pleasure to work with in any capacity.

Client Served

Rating: 5

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 .

Go F.

General Member of the Public

Rating: 5

Cooley is a Good organization educating parents on Thalassemia

Client Served

Rating: 5

This foundation has gone above and beyond for leading the fight against Thalassemia. I’m so happy they are here to help guide the patients and parents in any way they can. I applaud them for the work they are doing and hope they are supported forever in their mission.

1 Mandy Forbes W.

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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

1

Client Served

Rating: 5

Cooley's Anemia Foundation (CAF) volunteers and members goes out of their way to help patients and families. There are few patients is United states and it can be overwhelming diagnosis of a new born for the parents. CAF provides the hope and assurance for new parents which cannot be described till parents find themselves in this situation. CAF Keeps families informed of comprehensive best care practices, new and advanced therapies and they put in their heart to provide funds of research for the disease which is considered rare in united states but affect lot of people around the world. Thank you CAF for what you do for patients and their families. \

Volunteer

Rating: 5

The Cooley’s Anemia Foundation and it’s dedicated staff is an amazing organization that champions support for patients with Thalassemia. Thalassemia is a life threatening blood disorder that receives little recognition in the medical world. The Cooley’s Anemia Foundation fights hard to bring the needs of these patients to the forefront of the medical field in the hopes of finding a cure.

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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.

1

Donor

Rating: 5

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

1

General Member of the Public

Rating: 5

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.

1

General Member of the Public

Rating: 5

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

3

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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

1 Matthew AndJamie D.

Client Served

Rating: 5

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.

1 Allison Toler W.

Client Served

Rating: 5

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.