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DIAMOND BLACKFAN ANEMIA FOUNDATION
WEST SENECA, NY · EIN 161459422 · Form 990 · FY2024 · NTEE G12 · Voluntary Health Associations · Small ($100K-$1M) · dbafoundation.org
revenue
$499K
expenses
$397K
net assets
$1.8M
employees
1
volunteers
20
program ratio
92%
mission · from form 990

TO GENERATE FUNDS FOR THE CHARITABLE AND SCIENTIFIC PURPOSE OF PROVIDING SUPPORT FOR DIAMOND BLACKFAN ANEMIA PATIENTS, FAMILIES AND RESEARCH.

profile · synthesized from sources

The Diamond Blackfan Anemia Foundation supports patients and families affected by Diamond Blackfan Anemia Syndrome while advancing research toward better treatments and a cure. It funds peer-reviewed scientific studies, organizes patient and clinician meetings, and provides educational resources. The foundation operates internationally, connecting families and researchers to improve diagnosis, clinical care, and quality of life for those living with this rare disorder.

irs program accomplishments · form 990 part iii · fy2024

What they reported doing

  1. #1 primary $11K
    (ASH) EXHIBITION AT THE AMERICAN SOCIETY OF HEMATOLOGY ANNUAL MEETING (ASH) ATTENDED BY APPROXIMATELY 20,000 WORLDWIDE HEMATOLOGISTS TO PROVIDE THE LATEST CLINICAL AND RESEARCH INFORMATION PERTAINING TO DIAMOND BLACKFAN ANEMIA.
  2. #2 $84K
    (ADULTS WITH DBA) A MEETING ORGANIZED TO ADDRESS THE UNIQUE PHYSICAL AND PSYCHOSOCIAL CHALLENGES CONFRONTED BY ADULT PATIENTS LIVING WITH THE RARE DISORDER. THE MEETING WAS OPEN TO PATIENTS 18 YEARS OLD AND OLDER AND A SUPPORT PERSON. IN ADDITION TO SEVERAL PRESENTATIONS BY EXPERTS IN VARIOUS PERTINENT FIELDS, THE WEEKEND LONG MEETING ALSO PROVIDED AN OPPORTUNITY FOR ADULT PATIENTS TO MEET EACH OTHER AND COME TOGETHER AS A COMMUNITY. PATIENTS AND THEIR SUPPORT PERSON WERE ALSO AFFORDED TIME TO DISCUSS THEIR INDIVIDUAL CONCERNS WITH SEVERAL WORLD-RENOWNED CLINICIANS AND DBA RESEARCHERS.
named programs · 5 · from sources

What they call their work

ASH Exhibition
Presents clinical and research updates on DBA at the American Society of Hematology annual meeting to an international audience of hematologists.
Adult DBA Meeting
Annual meeting for adult patients and their support persons featuring expert presentations and opportunities for community building and one-on-one consultations with clinicians and researchers.
Camp Sunshine Organization
Supports and organizes Camp Sunshine, a program bringing together DBA-affected families for education, support, and community engagement.
DBA International Clinical Conference (DBA ICC)
Scientific conference bringing together DBA clinicians and researchers to share findings, coordinate clinical trials, and promote translational research.
DBA Research Grants
Funds peer-reviewed research projects worldwide focused on understanding DBA pathophysiology, developing gene therapies, improving diagnosis, and identifying cancer risks.
activities · 5 groups

What they do

  • Rare Genetic Disease Research and Advocacy 3 activities
    • Conducting and supporting DBA clinical research
      Supports and conducts clinical and translational research on Diamond Blackfan Anemia, including funding the North American DBA Registry (DBAR), publishing clinical care consensus documents, and supporting research on gene identification, animal models, drug screening, and gene therapy.
    • Disseminating clinical and research information to medical professionals
      Hosts exhibitions at major medical conferences, such as the American Society of Hematology annual meeting, to share clinical and research updates on Diamond Blackfan Anemia with approximately 20,000 hematologists.
    • Organizing patient and family engagement events
      Organizes in-person and virtual meetings and events for patients, families, and caregivers affected by Diamond Blackfan Anemia, including a weekend-long meeting for adult patients and their support persons featuring expert presentations, clinical consultations, and community-building activities.
  • Familial Support for Rare Genetic Conditions 1 activity
    • Facilitating family and patient networking
      Supports networking and connection among families affected by Diamond Blackfan Anemia across the United States, Canada, and globally, including through organized programs like Camp Sunshine.
  • Genetic and Neurological Disease Research Funding 1 activity
    • Funding research on Diamond Blackfan Anemia
      Funds medical research projects focused on Diamond Blackfan Anemia, including diagnosis, treatment, gene therapy, cancer predisposition, and stem cell transplantation strategies. Grants are awarded to academic and medical institutions and reviewed by a medical/scientific advisory board. Specific grants include $80,000 awards to researchers at Boston Children's Hospital and Stanford University.
  • Disease-Specific Clinical & Patient Education 1 activity
    • Providing educational resources and information on DBA
      Provides informational literature and hosts webinars on topics such as gene therapy for Diamond Blackfan Anemia, featuring expert presentations, discussions of benefits and risks, and Q&A sessions for patients, families, and caregivers.
  • Scientific Conference & Symposium Management 1 activity
    • Supporting clinical and scientific collaboration in DBA research
      Organizes conferences and meetings that bring together clinicians, scientists, and early-career investigators to share clinical trial results, coordinate research, advance translational science, and promote collaboration in the Diamond Blackfan Anemia field.
financials · form 990 · fy2024
revenue
Total revenue$499K
Contributions & grants$443K89%
Program service revenue$00%
Investment income$57K11%
Other revenue$0
expenses
Total expenses$397K
Program expenses92%
Admin / overhead7%
Fundraising1%
Salaries & benefits$74K
Grants paid out$215K
Largest expense lineCompensation
balance sheet
Total assets$1.78M
Cash$603K
Investments$1.18M
Liabilities$0
Net assets$1.78M
Liquid reserves53.8 mo
4 years on record · 2020–2024 · YoY revenue -24.8%
leadership · form 990 part vii · fy2024

Who runs it

paid leadership · 1
NameTitleHours/wkCompensation
DAWN BAUMGARDNER EXECUTIVE DIRECTOR 40 $66K
board members · 11
  • ANITA SHIER BRUTON — DIRECTOR
  • ANTHONY MARCHESE — DIRECTOR
  • CARA BREIDSTER — DIRECTOR
  • CAROL MANCUSO — SECRETARY
  • CHARLES BROWN — DIRECTOR
  • JACY DOWNEY — DIRECTOR
  • JAMIE DERMATIS — DIRECTOR
  • KATHI VROMAN — VICE PRESIDENT
  • LAUREN BRADY — DIRECTOR
  • PETER BAUMGARDNER — TREASURER
  • REBECCA DEGROFF — DIRECTOR
relationships · 26

Who they work with

  • Adrianna Vlachos Partner — Medical researcher and speaker in the DBAF-hosted webinar on gene therapy for Diamond Blackfan Anemia.
  • Alexandra Melissa Satty Partner — Medical researcher and speaker in the DBAF-hosted webinar on gene therapy for Diamond Blackfan Anemia.
  • Boston Children's Hospital Partner — Awardee Dr. Grant Rowe is affiliated with Boston Children's Hospital.
  • DBA Canada Partner — Collaborated with DBA Canada and Friends of DBA to award a research grant.
  • DBA Canada Partner — Collaborates with DBA Canada on grant funding initiatives.
  • DBA Canada Partner — Collaborates with DBA Canada to fund research grants for DBA-related therapies.
  • DBA Canada Partner — Collaborates with DBA Canada to support research grants for diagnosing Diamond-Blackfan Anemia Syndrome.
  • DBAF’s medical/scientific advisory board Network — Comprised of medical doctors and scientists who approve research projects funded by the DBAF.
  • Diamond Blackfan Anemia Registry Partner — Collaborates with the DBA Foundation to collect patient data while maintaining separate registration and privacy protocols.
  • Friends of DBA Partner — Collaborated with DBA Canada and Friends of DBA to award a research grant.
  • Friends of DBA Partner — Collaborates with Friends of DBA on grant funding initiatives.
  • Friends of DBA Partner — Collaborates with Friends of DBA to fund research grants for DBA-related therapies.
  • Friends of DBA Partner — Collaborates with Friends of DBA to support research grants for diagnosing Diamond-Blackfan Anemia Syndrome.
  • Imperial College London Partner — Partners with researchers at Imperial College London to study germline cancer risk alleles in DBA patients.
  • Independent accounting firm Government — Conducts annual review or audit of DBAF's finances
  • Jeffrey M. Lipton Partner — Medical researcher and speaker in the DBAF-hosted webinar on gene therapy for Diamond Blackfan Anemia.
  • Johan Flygare Partner — Medical researcher and speaker in the DBAF-hosted webinar on gene therapy for Diamond Blackfan Anemia.
  • Johns Hopkins All Children’s Hospital Partner — Partners with researchers at Johns Hopkins All Children’s Hospital to study germline cancer risk alleles in DBA patients.
  • National Institutes of Health Government — Target for follow-on funding from DBAF-supported preliminary studies.
  • Northwestern University Partner — Partners with researchers at Northwestern University to study germline cancer risk alleles in DBA patients.
  • Richard Voit Partner — Medical researcher and speaker in the DBAF-hosted webinar on gene therapy for Diamond Blackfan Anemia.
  • Senthil Bhoopalan Partner — Medical researcher and speaker in the DBAF-hosted webinar on gene therapy for Diamond Blackfan Anemia.
  • Stanford University Partner — Funds research conducted by Dr. Agnes Czechowicz and Dr. Kathleen Sakamoto at Stanford University related to stem cell transplantation and gene therapy for DBA.
  • Steven Ellis Partner — Research scientist and speaker in the DBAF-hosted webinar on gene therapy for Diamond Blackfan Anemia.
  • United Way Network — DBAF is registered with United Way Donor Choice Programs, enabling donors to direct contributions through United Way.
  • University of Turino Partner — Partners with researchers at the University of Turino to develop genomic tools for diagnosing Diamond-Blackfan Anemia Syndrome.
strategies · 4

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.

  • Biologically Targeted Therapeutic Development
    methodology: targeting_replication_stress_for_therapeutic_intervention
    By focusing research on specific molecular mechanisms such as replication stress and epigenetic dysregulation, the foundation improves diagnosis and treatment because targeting root biological causes enables precision interventions that enhance erythropoiesis and reduce complications.
  • Family-Engaged Research and Support Model
    methodology: family-engaged_research_and_support
    By integrating families into fundraising and support programming, the foundation advances research and community engagement because lived experience strengthens advocacy, increases donor investment, and improves patient outcomes through psychosocial and clinical support.
  • Patient-Centered Education with Realistic Hope
    methodology: patient_education_with_realistic_expectations
    By providing education that balances emerging treatment hope with realistic expectations and practical management tools, the foundation improves patient decision-making and quality of life because informed patients can better navigate care and maintain psychological well-being.
  • Translational Research Acceleration
    methodology: translational_research_collaboration
    By organizing scientific conferences that connect clinicians and researchers, the foundation accelerates translational research and clinical trial coordination because cross-disciplinary collaboration enables faster movement from bench to bedside.