irs program accomplishments · form 990 part iii · fy2024
What they reported doing
- #1 primary $314KTHE CENTER PROVIDES SPECIALIZED EVALUATION AND CARE FOR PATIENTS WITH HEREDITARY HEMOCHROMATOSIS AND IRON OVERLOAD. TYPICALLY, PATIENTS WITH THESE CONDITIONS RECEIVE REGULAR THERAPEUTIC PHLEBOTOMIES TO DIMINISH EXCESS IRON STORED IN THEIR BODIES, DIMINISHING RISK OF PERMANENT ORGAN DAMAGE. THE CENTER SERVES APPROXIMATELY 213 HEMOCHROMATOSIS/IOD PATIENTS.
- #2 $73KTHE CENTER HAS BEEN ACTIVELY INVOLVED IN RESEARCH AND CLINICAL TRIALS IN AN EFFORT TO CULTIVATE ADVANCES IN HEMOPHILIA, VON WILLEBRAND DISEASE AND HEMOCHROMATOSIS. IN 2024, THE CENTER PARTICIPATED IN 2 OPEN RESEARCH STUDIES ADDRESSING A WIDE RANGE OF CLINICAL AREAS AND OUTCOMES. IN ADDITION, THE CENTER WORKS CLOSELY WITH THE CENTER FOR DISEASE CONTROL (CDC) AND THE AMERICAN THROMBOSIS AND HEMOSTASIS NETWORK (ATHN) REGISTRIES, COLLECTING DATA AS PART OF A NATIONAL EFFORT TO BETTER UNDERSTAND AND CARE FOR RARE BLEEDING DISORDERS.
named programs · 5 · from sources
What they call their work
Hemochromatosis and Iron Overload Program
Specialized care for patients with hereditary hemochromatosis, including regular therapeutic phlebotomy to reduce iron overload and prevent organ damage.
Hemophilia and Bleeding Disorders Treatment
Provides comprehensive medical evaluation, diagnosis, and treatment for patients with hemophilia, von Willebrand disease, and rare inherited bleeding disorders.
Home Infusion Program
Enables patients to receive clotting factor treatments at home, improving access and quality of life.
Research and Clinical Trials
Participates in national research studies and clinical trials in collaboration with CDC and ATHN to advance understanding and treatment of bleeding disorders.
Scholarship Opportunities
Offers financial assistance to members of the bleeding disorders community pursuing higher education.
activities · 5 groups
What they do
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Bleeding and Blood Disorder Support Services 3 activities
- Conducts and participates in clinical research studiesEngages in ongoing research and clinical trials related to hemophilia, von Willebrand disease, hemochromatosis, and other bleeding disorders, including participation in two open studies in 2024 and the National Hemophilia Treatment Center Network’s Patient Satisfaction Survey to inform care quality.
- Provides comprehensive multidisciplinary care for bleeding and inherited disordersDelivers specialized medical care to individuals with hemophilia, von Willebrand disease, other rare bleeding disorders, hemochromatosis, and Gaucher's disease in a 14-county region surrounding Rochester, NY. Services include access to hematologists, nurses, pharmacy support, social work, and therapeutic phlebotomies for iron overload management.
- Supports national and regional capacity building for hemophilia carePlayed a foundational role in establishing the hemophilia treatment center model in the U.S., including supporting the development of centers in Buffalo, Syracuse, Albany, the Southern Tier, and beyond.
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Healthcare Policy Advocacy 1 activity
- Advocates for policy change at state and federal levelsParticipates in legislative advocacy through annual events such as “Washington Days” and “Albany Day,” engages in at least two legislative initiatives per year, and has historically advocated for federal funding and insurance coverage for bleeding disorder treatments.
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Inclusive Social & Recreational Events 1 activity
- Hosts community events and educational programsOrganizes in-person events such as Family Fun Days, holiday parties, and educational activities—including video content featuring patient and family insights—to build community and provide education following the resumption of gatherings post-pandemic.
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Pharmacy Access and Medication Assistance 1 activity
- Operates an on-site pharmacy for bleeding disorder medicationsManages and distributes medications for bleeding disorders through a New York State registered pharmacy, supporting patient access to essential treatments.
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Health Insurance Enrollment Assistance 1 activity
- Provides individual patient advocacy and insurance supportOffers direct support to patients and families navigating healthcare systems, including assistance maintaining coverage through commercial insurance, Medicare, or Medicaid.
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financials · form 990 · fy2024
revenue
Total revenue$28.67M
Contributions & grants$133K0%
Program service revenue$27.02M94%
Investment income$1.52M5%
Other revenue$1K
expenses
Total expenses$21.55M
Program expenses97%
Admin / overhead3%
Fundraising0%
Salaries & benefits$1.43M
Grants paid out$0
Largest expense lineCompensation
balance sheet
Total assets$35.96M
Cash$2.49M
Investments$28.06M
Liabilities$3.27M
Net assets$32.68M
Liquid reserves17.0 mo
5 years on record · 2020–2024 · YoY revenue +13.0%
leadership · form 990 part vii · fy2024
Who runs it
paid leadership · 5
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| THOMAS WILMARTH | PRESIDENT & CEO | 40 | $228K |
| GREGORY LIGHTHOUSE CPA | CFO | 40 | $196K |
| ERIC IGLEWSKI LMSW | VP OF CLINICAL SERVICES | 40 | $172K |
| TARA VEITH MSN FNP-C | NURSE PRACTITIONER | 40 | $134K |
| SAMANTHA VITAGLIANO DMD | FORMER CHAIRPERSON | 1 | $1K |
board members · 9
- ANDREW PARK — CHAIRPERSON
- CHRISTINE HAY MD — SECRETARY
- DAN GURELL — TREASURER
- LARRY DENK MD — BOARD MEMBER
- NICHOLAS FARRIS MD — BOARD MEMBER
- PETER KOUIDES MD — NON-VOTING BOARD MEMBER
- ROBIN REID MD — NON-VOTING BOARD MEMBER
- RONALD SHAM MD — BOARD MEMBER
- TIMOTHY ABBAMONTE DDS — BOARD MEMBER
relationships · 34
Who they work with
- Abbamonte Dental Associates Partner — Employer of board member Tim Abbamonte
- American Thrombosis & Hemostasis Network Partner — Center leadership participated in establishing ATHN, a key organization in the bleeding disorders community.
- American Thrombosis and Hemostasis Network Partner — Collaborates to improve health outcomes and quality of life for persons with bleeding disorders.
- American Thrombosis and Hemostasis Network Partner — Works with ATHN registries to collect clinical data as part of a national effort to improve care for rare bleeding disorders.
- Blue Cross and Blue Shield of the Rochester Area Partner — Collaborated to secure the first U.S. health insurer coverage for blood products used in hemophilia treatment.
- CDC Government — Federally designated Hemophilia Treatment Center under the CDC's network of Hemophilia Treatment Centers.
- Camp High Hopes Partner — Refers or coordinates patient participation in camp programs at Camp High Hopes.
- Center for Disease Control Government — Collaborates with the CDC on data collection through national registries to better understand and care for rare bleeding disorders.
- Centers for Disease Control and Prevention Partner — Collaborates to improve health outcomes and quality of life for people with bleeding disorders.
- Double H Ranch Partner — Refers or coordinates patient participation in camp programs at Double H Ranch.
- Goldman Sachs Partner — Employer of board member Patrick Hyland, indicating institutional affiliation
- Golisano Children’s Hospital Partner — Employer of board member Nicholas Farris, indicating institutional affiliation
- Hemophilia Alliance Partner — Center leadership helped establish the Hemophilia Alliance, a critical organization in the bleeding disorders community.
- Hemophilia Alliance Partner — Collaborates to improve health outcomes and quality of life for persons with bleeding disorders.
- Hemophilia Federation of America Network — Chapter member offering supportive patient programs and regional networking.
- Hemophilia Federation of America Partner — Collaborates with experienced advocates on issues impacting patients served by the Center.
- Hemophilia Federation of America Partner — Sends patients or participates in the HFA National Symposium.
- Henrietta Fire District Partner — Employer of board member Tim Roberts
- Lipson Cancer Center Partner — Employer of board member Ronald Sham
- National Bleeding Disorders Foundation Network — Chapter member participating in national advocacy efforts including "Washington Days".
- National Bleeding Disorders Foundation Network — Member chapter providing patient programs and networking opportunities.
- National Bleeding Disorders Foundation Network — Member of the national network that supports the bleeding disorders community through education and advocacy initiatives.
- National Bleeding Disorders Foundation Network — Member of the national network through the Rochester Chapter, originally chartered as part of the National Hemophilia Foundation.
- National Bleeding Disorders Foundation Partner — Partners on educational initiatives such as Educate to Elevate.
- National Hemophilia Foundation Partner — Collaborates on educational video content for individuals and families affected by bleeding disorders.
- National Hemophilia Foundation Partner — Participates in NHF Washington Days and the NHF Annual Bleeding Disorders Conference.
- New York State Bleeding Disorders Coalition Partner — Member organization that unites bleeding disorders groups across New York State for coordinated advocacy.
- New York State Bleeding Disorders Coalition Partner — Participates in Albany Days, organized by the NYSBD.
- Rochester region Network — Hosts the only Bleeding Disorders Walk in the Rochester region.
- United Way ROCFLX Partner — Collaborates on community giving initiatives, including the United Way Campaign 2026.
+ 4 more
strategies · 3
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.
- Comprehensive, Multidisciplinary Care Modelmethodology: comprehensive_care_modelBy integrating medical, pharmacy, and social services into a unified care team, the center improves health outcomes and reduces patient stress, because coordinated, whole-person support increases treatment adherence and reduces system fragmentation.
- Integrated Advocacy Through Educationmethodology: education-as-advocacyBy educating institutions about bleeding disorders, the center strengthens systemic advocacy and representation, because informed institutions are more likely to adopt inclusive policies and accommodations that improve patient outcomes.
- Peer-Powered Education and Supportmethodology: peer_support_educationBy facilitating peer-to-peer storytelling and shared lived experiences, the center enhances patient education and emotional resilience, because relatable narratives increase engagement and trust more effectively than clinical instruction alone.