Cooley's Anemia Foundation, Inc.

Leading the Fight Against Thalassemia

aka CAF   |   New York, NY   |  http://www.thalassemia.org

Mission

The mission of Cooley’s Anemia Foundation is to increase life expectancy and enhance the quality of life for those impacted by thalassemia, a class of genetic blood disorders, most of which require regular blood transfusions and aggressive management of chronic iron overload, the predominant cause of early death. We do so by funding medical research to advance treatment and curative approaches, by supporting and advising patients and their families and advocating on their behalf, and by educating medical professionals and the general public. Every day, we strive for longer and healthier lives for all patients with thalassemia until a universal cure is found.

Ruling year info

1975

National Executive Director

Craig Butler

Main address

330 Seventh Avenue, Suite 200

New York, NY 10001 USA

Show more contact info

EIN

11-1971539

NTEE code info

Specifically Named Diseases (G80)

Blood Supply Related (E61)

Alliance/Advocacy Organizations (H01)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Every day, we strive for longer and healthier lives for all patients with thalassemia until a universal cure is found.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Coley's Anemia Foundation

CAF's operating programs include Patient Services, Medical Programs, and Education and Outreach. Through its Patient Services Programs, CAF works to improve the quality of life of thalassemia patients and promote compliance with the difficult treatment protocol. CAF sponsors an annual Patient/Parent Conference that brings together patients and their families with the most outstanding medical experts in the field. CAF's Pump Program provides patients with new and repaired infusion pumps free of charge. CAF works to educate the public and the medical profession about thalassemia by distributing a variety of publications and public service announcements. Through its Medical Programs, CAF offers fellowships to scientists for research projects aimed at improving treatments and finding a cure for thalassemia.

Population(s) Served
People with diseases and illnesses
Families

Through its Patient Services Programs, CAF works to improve the quality of life of thalassemia patients and promote compliance with the difficult treatment protocol. CAF sponsors an annual Patient/Parent Conference that brings together patients and their families with the most outstanding medical experts in the field. CAF's Pump Program provides patients with new and repaired infusion pumps free of charge.

Population(s) Served
People with diseases and illnesses
Families

Through its Medical Programs, CAF offers fellowships to scientists for research projects aimed at improving treatments and finding a cure for thalassemia.

Population(s) Served
People with diseases and illnesses

CAF works to educate the public and the medical profession about thalassemia by distributing a variety of publications and public service announcements.

Population(s) Served
Adults

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Patient Services

This metric is no longer tracked.
Totals By Year
Population(s) Served

Chronically ill people

Related Program

Patient Services

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Available services include doctor referrals, medication information, social service intervention, financial aid for direct services, and scholarships for conferences and education.

Research

This metric is no longer tracked.
Totals By Year
Related Program

Research

Type of Metric

Other - describing something else

Direction of Success

Increasing

Context Notes

In 2020, $400,000 in medical research grants were given on the basis of the scientific content, the academic accomplishments and future promise of the investigator, and the relevance of the project.

Public Awareness

This metric is no longer tracked.
Totals By Year
Related Program

Public Awareness

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Public Health messages via Social Media and our Website reached 15,600 people in all fifty states. This included 3,505 Facebook followers and 977 Twitter followers.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

The mission of the Cooley's Anemia Foundation is to increase life expectancy and enhance the quality of life for those impacted by thalassemia, a class of genetic blood disorders, most of which require regular blood transfusions and aggressive management of chronic iron overload, the predominant cause of early death. We do so by funding medical research to advance treatment and curative approaches, by supporting and advising patients and their families and advocating on their behalf, and by educating medical professionals and the general public.
Every day, we strive for longer and healthier lives for all patients with thalassemia until a universal cure is found.

We seek to find a universal cure. To this end, we fund clinical research. When the Foundation was begun in 1954, patients rarely lived pass adolescence. Today, thanks to advances in clinical intervention funded by our research partners, patients are living into their fifties and sixties. We also seek to connect with more patients in additional ethnic groups who are affected by this genetic disorder to advise them of our patient services and support, including information on genetic traits. We are stepping-up our efforts to attract this important demographic and to alert the general public about our services.

We are the only national organization focused solely and exclusively on thalassemia. We are also the only foundation simultaneously funding research for the cure of thalassemia, providing information and counseling to patients, and letting others know about disorder and the fight to end it. We are also different in that, while we are an organization of modest size and means, we have succeeded over the past sixty years in making the needs of our patient population known to government agencies in a manner that belies our size.

An estimated 150,000,000 people worldwide carry the trait for thalassemia. An estimated 2,000,000 Americans carry the trait. Some 100,000 babies are born each year with a severe form of thalassemia. Without proper care, infants born with a severe form of thalassemia rarely survive infancy. In one survey, 52% of reported causes of death of US patients was cardiac-related (depsite the fact that most patients expire before reaching age of 50.) In another study, 37% of thalassemia patients were diagnosed with heart disease, with the mean age of onset at 23 years. Because trait carriers are typically asymptomatic, most are unaware that they are carrying a trait and can pass a severe form of the disorder on to their children.

The Cooley's Anemia Foundation is dedicated to serving people throughout the United States afflicted with various forms of thalassemia, most notably the major form of this genetic blood disease, Cooley's anemia/thalassemia major. We are also the primary funding source for research studies that have resulted in various medical breakthroughs in the search for a cure - primarily raising the life expectancy by several decades. As the leader in medical research initiatives, Cooley's Anemia Foundation is producing results that will benefit patients around the world. Patients in the US also receive direct benefit from our annual Patient-Family Conferences; educational materials on thalassemia, its management and complications associated with it; an on-staff Social Worker who develops strategies to assist patients facing special issues; and our communications efforts which connect patients and families around the country.

We believe that we husband our resources very efficiently. We have a very small staff and rely heavily on volunteers to organize and carry-out fundraising activities. Our resources go primarily to providing patients with information and counseling, funding research and clinical trials, and hosting an annual patient/family national conference at which thalassemia medical experts provide vital information. We have also continued our long-running series of periodic symposia conducted in collaboration with the New York Academy of Sciences which bring together the international thalassemia medical and scientific communities.

For more than sixty years, the Cooley's Anemia Foundation, a 501(c)(3) nonprofit organization, has been a strong and supportive partner for families living with thalassemia. Although now national in scope, CAF began on a local level – a fact reflected in the continuing importance of our local chapters.

In 1954, Frank Ficarra was a young Italian-American businessman working and living in Brooklyn when two of his young children were diagnosed with a rare blood disease, Cooley's anemia, also known as thalassemia major.

Frank Ficarra began organizing neighborhood blood drives to make sure that his children and others like them would have the precious blood they needed to survive. Even though these blood drives were successful, Frank Ficarra realized that more was needed.

One autumn night, Frank Ficarra and the parents of other Cooley's anemia patients met in the back of his Brooklyn butcher shop to discuss what they could do to help their children and let the world know about this rare disease. From that meeting, the seeds of the Cooley's Anemia Foundation were sown.

Since that night, CAF has grown into a national and international force with an extraordinary record of accomplishments. CAF established the first Fellowship Program for thalassemia research and has become a strong voice in Washington for thalassemia patients and their families.

Today, Frank Ficarra's son, Robert, serves as CAF Vice President of International Affairs and continues the work his father began on an international scale, reaching out to patients in every corner of the globe where medical knowledge and supplies are lacking.

What began as the story of one man's family is today the story of many families working together toward a common goal – better treatments and a cure for a disease which threatens their most precious resource – their children.

We have yet to find the cure and will not stop until we do.

Financials

Cooley's Anemia Foundation, Inc.
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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Cooley's Anemia Foundation, Inc.

Board of directors
as of 7/7/2021
SOURCE: Self-reported by organization
Board chair

Peter Chieco

Managing Director, Morgan Stanley

Term: 2018 - 2022

Anthony J. Viola, CPA, Immediate Past National President

Senior Partner, Katz, Viola, Lebenhart & Mauro , LLP

Amy Celento, Executive Committee Member

Owner/Director, Brain Body Vitality Center

Janet Kwiatkowski, MD, MSCE Medical Advisory Board Chairman, Executive Committee Member

Director of the Thalassemia Program at the Children's Hospital of Philadelphia

Dean Hernan Treasurer, Executive Committee Member

Public Accountant, Katz, Viola, Lebenhart & Mauro , LLP; CFO, The Forum Group

Janice Cenzoprano Vice President, Executive Committee Member

Office Manager, The Physical Rehabilitation Center

Carmine Abruzzo

General Manager, BMW of Brooklyn

Robert Aiello

Co-Founder and Executive Vice President, High Rise Fire and Security

Josephine Bila-Flood, MSW '

Producer, CNBC; Wellness Consultant

Cammie Brandofino Executive Committee Member

Benefits Coordinator, Safeharbor Healthcare Services

Shirley Cammilleri Rochester Chapter Representative

Day Care Provider

Julia Cenzoprano

Senior Auditor, EY

Mary Ann Cervoni-Iaia Executive Committee Member, Suffolk Chapter Representative

Patient Advocate

Thomas Cheng California Chapter Representative

Adjunct Professor, West Los Angeles College

Alan Cohen, MD Medical Advisory Board Member

Hematologist, Children's Hospital of Philadelphia

Ralph Colasanti Executive Committee Member

Financial Services Consultant

Terri DiFillippo Executive Committee Member

NYC Department of Education (Retired)

Joseph DiTrapani '

CEO, Order Sons and Daughters of Italy in America

Anthony Ferrino Queens Chapter Representative

New York City Sanitation; Sergeant at Arms, Columbia Association

Robert Ficarra Executive Committee Member; Representative to Thalassemia International Federation

Owner, Bob Ficarra Associates

Antoni Foe

Senior Programmer/Analyst, Intel Corporation

Frank Fusaro

President, The Forum Group; Board of Governors, Columbus Citizens Foundation

Anish Goel, PhD

Professional Staff Member, U.S. Senate Committee on Armed Forces

Maria Hadjidemetriou Secretary; Executive Committee Member; Alternate Representative to Thalassemia International Federation

Real Estate Sales Agent; Writer for Archetecture + Lifelstyle

Christine Horton New Jersey Chapter Representative

Freelance Graphic Artist & Creator

Richard Kirkendall

Vice President, Worldwide Quality Assurance & Regulatory Affairs, Immucor, Inc.

Frank Marzano

Managing Principal, GM Advisory Group

Gianna Palminteri

Founder/Co-President,The Child Reach Foundation; Producer, MGRP Productions

Chi Pham '

Senior IT Specialist

Paul Polo

Senior Vice President, General Manager, Adchem Manufacturing Technologies, Inc.

Michael Pouchie

President & COO, National Distribution Alliance LLC

Michael Presto

Chairman & CEO, National Distribution Alliance LLC

Sharon Farrell Radonis Suffolk Chapter Representative

Senior Paralegal, Law Office of John P. Rosenblatt

Thomas A. Rotolo Long Island Chapter Representative

President, Imprenditore OPS

Phil Rutigliano

Marketing Consultant

Joseph Sciame '

President, Sons of Italy Foundation; Vice President for Community Relations, St. John's University

Frank Somma Executive Committee Member

Keynote Speaker / Sales Trainer

Frank Tidona UNICO Representative

Hazardous Materials Technician, Unilever Bestfoods

Teresa Tomaino Chicago Chapter Representative

Patient Advocate

James Ventola North Jersey Chapter Representative

Law Enforcement / Government

Joseph Vigliotti, Esq. Executive Committee Member

Of Counsel, Bertone Piccini, LLP

Tom Watral

Vice President, Watral Brothers, Inc.

Joseph Zuraw

Sr Director - Patient Relations, Grifols

Tracy Antonelli '

Patient/Parent Advocate

Sarah Baqueri Connolly '

Owner, Sir Speedy Plainview; Patient/Parent Advocate

Michelle Chieco Lenz Westchester/Rockland Chapter Representative

Registered Nurse, NYU Hospital

Peter Chieco President

Managing Director, Morgan Stanley

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Not applicable
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Not applicable
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 07/07/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data