irs program accomplishments · form 990 part iii · fy2024
What they reported doing
- #1 primary $360KPUBLIC INFORMATION - GENERAL INFORMATION FOR THE GENERAL PUBLIC: FILMS, BROCHURES, AND LEGISLATIVE SYMPOSIUM FOR THE MEDICAL PROFESSION.
- #2 $948KPATIENT SERVICES - BLOOD FOR PATIENTS AND DIRECT PATIENT AID.
named programs · 3 · from sources
What they call their work
Patient Services
Offers direct aid to patients, including blood supply coordination and support for ongoing medical care.
Public Information and Education
Provides brochures, films, and legislative symposia to educate the public and medical professionals about Thalassemia.
Thalassemia Research Fellowship
Supports research initiatives and training for medical professionals focused on Thalassemia treatments and cures.
activities · 8 groups
What they do
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Healthcare Policy Advocacy 1 activity
- Advocating for thalassemia patients at national and policy levelsEngages in national advocacy efforts in Washington, co-hosted the First Cooley’s Anemia Symposium with the New York Academy of Sciences to convene international experts, and has sustained policy advocacy for 70 years to advance patient rights and treatment access.
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Bleeding and Blood Disorder Support Services 1 activity
- Delivering direct patient aid and advancing clinical careProvides direct patient support including access to blood and medical care, supports bone marrow transplant procedures that reduce or eliminate transfusion dependence, and facilitated the first documented birth by a Thalassemia Major patient, marking advances in reproductive care.
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Blood and Marrow Donation Drives 1 activity
- Facilitating blood transfusion support and organizing blood donation drivesOrganizes neighborhood and community blood drives, shares blood drive event details with the public, and supports the blood transfusion needs of thalassemia patients through coordinated donation efforts.
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Genetic and Neurological Disease Research Funding 1 activity
- Funding clinical research and advancing gene therapyProvides grants to support ongoing clinical research in thalassemia, funded the first use of gene therapy in a thalassemia patient, and supported the development of CRISPR-based therapy leading to FDA approval of Casgevy for transfusion-dependent beta thalassemia.
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Charity Event Organization 1 activity
- Hosting annual Care Walk events for awareness and fundraisingOrganizes an annual Care Walk in Chicago, including the 2024 event at Horner Park, to raise public awareness and funds for thalassemia; originally launched as the first national Care Walk.
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Disease-Specific Clinical & Patient Education 1 activity
- Providing thalassemia education and informational resourcesDistributes educational materials such as brochures and films, offers multilingual resources for public download, and provides detailed information about types of thalassemia (including Beta and Alpha Thalassemia), severity levels, and treatment options like blood transfusions and medical care.
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Research and Scholarly Fellowship Support 1 activity
- Supporting thalassemia research through fellowship programsEstablished the first fellowship program dedicated to thalassemia research, building long-term research capacity in the field.
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Uncategorized 1 activity
- Promoting patient leadership and organizational capacity buildingElected Ralph Colasanti, a thalassemia patient, as the organization’s President, reflecting a commitment to patient-led governance and strengthening internal leadership capacity.
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financials · form 990 · fy2024
revenue
Total revenue$3.55M
Contributions & grants$3.02M85%
Program service revenue$00%
Investment income$240K7%
Other revenue$286K
expenses
Total expenses$2.30M
Program expenses75%
Admin / overhead11%
Fundraising14%
Salaries & benefits$959K
Grants paid out$250K
Largest expense lineCompensation
balance sheet
Total assets$7.57M
Cash$5.76M
Investments$0
Liabilities$657K
Net assets$6.91M
Liquid reserves30.1 mo
6 years on record · 2019–2024 · YoY revenue +26.2%
leadership · form 990 part vii · fy2024
Who runs it
paid leadership · 2
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| CRAIG BUTLER | EXECUTIVE DI | 40 | $164K |
| AMY SULLIVAN | MAJOR GIFTS | 40 | $105K |
board members · 20
- AMNISH GOEL — DIRECTOR
- AMY CELENTO — DIRECTOR
- ANTHONY VIOLA — DIRECTOR
- BEN LI — DIRECTOR
- CAMMIE BRANDOFINO — DIRECTOR
- CARMINE ABRUZZO — DIRECTOR
- CHRISTINE HORTON — DIRECTOR
- DEAN HERNAN — DIRECTOR
- FRANK FUSARO — DIRECTOR
- FRANK SOMMA — DIRECTOR
- JAMES VENTOLA — DIRECTOR
- JENNIE ROSE CHIECO — DIRECTOR
- JOHN MANCINO — DIRECTOR
- JOSEPH DI TRAPANI — DIRECTOR
- JOSEPH M TANTILLO — DIRECTOR
- JOSEPH SCIAME — DIRECTOR
- JOSEPH ZURAW — DIRECTOR
- JOSEPHINE FLOOD — DIRECTOR
- JULIA CENZAPRANO — DIRECTOR
- LAURIE PIZZO — DIRECTOR
relationships · 11
Who they work with
- Amy Sulllivan Partner — Major Gifts Officer responsible for outreach regarding legacy society participation
- Arianna Bonomi Partner — Volunteer leader of the Chicago CAF Chapter
- CRISPR Therapeutics Partner — Collaborates with CRISPR Therapeutics on the development and delivery of Casgevy gene-editing therapy for beta thalassemia.
- Frank Ficarra Partner — Founder and parent of patients who initiated the organization and early blood drives.
- Local Blood Banks Partner — Collaborates with local blood banks to facilitate blood donation and blood drive logistics.
- New York Academy of Sciences Partner — Collaborated to present the First Cooley’s Anemia Symposium.
- Robert Ficarra Partner — Current Vice President of International Affairs, continuing the family’s leadership in global outreach.
- Teresa Tomaino Partner — Volunteer leader of the Chicago CAF Chapter
- Thalassaemia International Federation Partner — Collaborates on the creation and distribution of educational materials including a comprehensive e-glossary and travel guidance for patients.
- Vertex Pharmaceuticals Partner — Collaborates with Vertex on the development and delivery of Casgevy gene-editing therapy for beta thalassemia.
- grants@thalassemia.org Partner — Email contact point for submission of grant applications and letters of intent for clinical research funding.
strategies · 5
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Accelerated Clinical Research Pipelinemethodology: clinical research accelerationBy funding pilot studies, observational trials, and ancillary analyses, the foundation generates preliminary data that de-risks and accelerates larger clinical research, because early-stage support enables innovation and attracts further investment in thalassemia therapies.
- Community-Based Care and Education Expansionmethodology: community-based chapter modelBy operating local chapters and providing multilingual educational materials, the foundation increases access to care and knowledge for diverse thalassemia populations, because localized, culturally accessible support improves health literacy and engagement.
- Family-Led Advocacy and Community Mobilizationmethodology: family-led advocacyBy uniting families and parents of affected patients, the foundation builds grassroots awareness and drives collective action for thalassemia, because lived experience and personal connection generate sustained advocacy and public engagement.
- Integrated Research, Support, and Advocacy Modelmethodology: integrated_research_support_advocacyBy combining research funding, patient support, and advocacy efforts, the foundation accelerates progress in thalassemia care and cure development, because synergistic action across these domains amplifies impact beyond what any single approach could achieve.
- Networked Access to Advanced Therapiesmethodology: network-of-careBy establishing a network of authorized treatment centers, the foundation expands patient access to gene-editing therapies for transfusion-dependent beta thalassemia, because centralized expertise and coordinated care delivery enable safe, equitable adoption of cutting-edge treatments.