irs program accomplishments · form 990 part iii · fy2024
What they reported doing
- #1 primary $5KFamily Centered Patient Advocacy Academy
- #2 $11KSymposiums and speaking engagements to raise awareness of issues related to patient safety and training
named programs · 4 · from sources
What they call their work
Annual Patient Safety Symposium
Two-day event convening patient advocates, medical professionals, and safety leaders to discuss critical topics such as AI in healthcare, medical error prevention, and health equity. Includes continuing education opportunities.
Family-Centered Patient Advocacy (FCPA) Training
Comprehensive training program that equips family members and community members with skills to partner effectively with medical teams, based on a manual developed in 2006. Includes annual in-person and virtual sessions.
Patient Activation through Community Conversations
Program offering virtual and in-person community workshops designed to empower patients and strengthen community engagement in patient safety.
TakeCHARGE Campaign
Public education initiative promoting five steps to safer healthcare with an emphasis on communication, offering safety tools and educational resources to patients and advocates.
activities · 7 groups
What they do
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Healthcare Policy Advocacy 1 activity
- Advancing Patient Safety Policy and National InitiativesEngages in advocacy by contributing to state and national patient safety efforts, including co-authoring legislation like New York’s Patient Health Information and Quality Improvement Act of 2000, serving on boards such as the National Patient Safety Foundation and The Joint Commission, co-chairing advisory councils, and launching Patient Safety Awareness Week in 2002.
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Scientific Conference & Symposium Management 1 activity
- Convening Symposia and Professional Forums on Patient SafetyOrganizes annual and virtual symposia—such as the Family-Centered Symposium and events on diagnostic errors and AI in healthcare—and facilitates professional forums that bring together patient advocates, medical professionals, and safety leaders to advance dialogue and collaboration in patient safety.
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Patient and Family Support Services 1 activity
- Direct Patient and Family Advocacy Support ServicesProvides direct advocacy support to patients and families during healthcare encounters, including bedside assistance, end-of-life care navigation, surgical support (including for transgender patients), and post-medical injury guidance. Services focus on improving communication, upholding patient rights, reducing anxiety, and navigating complex systems.
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Professional Certification and Continuing Education 1 activity
- Family-Centered Patient Advocacy Training and EducationOffers comprehensive training programs, including the Family-Centered Patient Advocacy Training manual (first of its kind in the U.S., developed in 2006), specialized courses, and accredited continuing education for Board-Certified Patient Advocates. Programs are delivered through virtual academies, monthly series, and annual symposia, with curricula used nationally in healthcare training.
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Public Awareness and Educational Outreach 1 activity
- Patient Safety Public Education and Resource DistributionProduces and distributes educational materials such as press releases, newsletters, webinars, downloadable checklists, question guides, and online resources to inform healthcare consumers and advocates about patient safety, medical error prevention, and system navigation.
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Disease-Specific Clinical & Patient Education 1 activity
- Virtual Educational Programming for Patient AdvocatesHosts recurring virtual educational programs including the Advocates Collaborative Educational Series (ACES), Patient Activation through Community Conversations (PACC), People for Patient Safety (PPS), Pulse Summer Series, and monthly discussion forums. These include expert-led sessions, case studies, guided discussions, and networking opportunities, many offered free with optional CE credits.
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Uncategorized 2 activities
- Annual TakeCHARGE Campaign and Awareness InitiativesRuns the annual TakeCHARGE Campaign, promoting patient safety through five monthly steps aligned with key awareness dates, alongside special events and an annual comedy show fundraiser to support advocacy and safety programming.
- Curriculum Development and Research in Patient AdvocacyAuthored foundational educational resources including *Teaching Patient Safety: An Educator’s Guide* and *Family Centered Patient Advocacy: A Training Manual*, and developed curricula on medical error disclosure and family-centered advocacy adopted in training programs across the U.S.
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financials · form 990 · fy2024
revenue
Total revenue$32K
Contributions & grants$15K45%
Program service revenue$18K55%
Investment income$30%
Other revenue$0
expenses
Total expenses$38K
Program expenses41%
Admin / overhead42%
Fundraising17%
Salaries & benefits$0
Grants paid out$0
Largest expense lineFacilities
balance sheet
Total assets$79K
Cash$79K
Investments$0
Liabilities$18K
Net assets$60K
Liquid reserves24.7 mo
4 years on record · 2021–2024 · YoY revenue -29.5%
leadership · form 990 part vii · fy2024
Who runs it
board members · 9
- Adriane Carrier — Trustee
- C Lynn Chevalier — Trustee
- Ilene Corina — President/CEO
- Jackie Namwila — Trustee
- James Donnelly — Trustee
- Karen Campbell — Trustee
- Kathy Casale — Trustee
- Leslie Snapper — Treasurer
- Susan Capurso — Trustee
relationships · 24
Who they work with
- 516ads Network — Member of 516ads network.
- ACOG Partner — Collaborated through appointments of Pulse leaders to the Patient Safety board and Women's Healthcare work group.
- American Hospital Association (AHA) Partner — Recognized Pulse leadership through the AHA/NPSF leadership scholarship.
- Connecticut Center for Patient Safety Partner — Partners with the Connecticut Center for Patient Safety, as indicated by testimonial from Jean Rexford.
- David Lawrence, Magic of the Mind Partner — Provides a special appearance at the Pulse Comedy Show fundraiser.
- East End Doula Care LLC Partner — Collaborates with Pulse-trained advocates to support end-of-life patients during medical procedures.
- Greater National Advocates Partner — Collaborates with Greater National Advocates through shared programming and speaker participation.
- Greater National Advocates Partner — Collaborates with trained advocates affiliated with Greater National Advocates.
- Greater National Advocates Partner — Partner organization represented by program committee member Sofie Schwartz.
- Ilene Corina Partner — Trained patient safety advocate affiliated with Pulse who provides direct support to patients during medical care.
- LIUU Fund Funder — Provided a grant to support Pulse’s 'Ask For Your Life' infection prevention initiative.
- Long Island Community Foundation Funder — Provided a grant to Pulse after it gained nonprofit status in 2000.
- Long Island Health Collaborative Network — Member of the Long Island Health Collaborative.
- National Aging in Place Council (NAIPC) Network — Member of the National Aging in Place Council.
- National Patient Safety Foundation Partner — Collaborated through Pulse president’s co-chair role on the Patient and Family Advisory Committee and participation in national conferences.
- National Patient Safety Foundation Partner — Ilene Corina served on the board from 2002 to 2017, contributing to national patient safety initiatives.
- On My Way Concierge Partner — Collaborates with Pulse to create custom raffle baskets for the fundraiser.
- Patient Advocate Certification Board Government — Approves PACC for continuing education credits for Board Certified Patient Advocates.
- Press Ganey Partner — Collaborates with Dr. Gary Yates, Partner in Strategic Consulting at Press Ganey, who supports Pulse's mission of engaging everyone in patient safety.
- Pulse Center for Patient Safety Education & Advocacy Network — Hosts the Pulse Summer Series focused on patient safety and advocacy.
- South Nassau Unitarian Universalist Congregation Partner — Hosted Pulse CPSEA's founding as part of its Social Action Committee.
- The Joint Commission Partner — Engaged through Pulse president’s appointment to the Board of Commissioners and participation in Health Literacy Roundtable and LGBT work group.
- The Joint Commission Partner — Engages with leadership from The Joint Commission, as evidenced by testimonial from Mark R. Chassin, its President.
- The Joint Commission Partner — Ilene Corina served on the board from 2005 to 2018, contributing to initiatives on health literacy, cultural competence, and family-centered care.
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.
- Education as Preventionmethodology: education-for-preventionBy equipping patients, families, and caregivers with knowledge about patient safety, we prevent medical errors and improve care quality because informed individuals are more likely to recognize risks and advocate effectively during medical events.
- Family-Centered Advocacy Modelmethodology: family-centered advocacyBy training and supporting family members and informal caregivers as primary advocates, we improve patient safety because personal relationships foster trust, continuity, and compassionate engagement that professional-only models may lack.
- Peer-Based Knowledge Exchangemethodology: peer_learningBy facilitating peer learning and dialogue around real-life healthcare experiences, we strengthen patient advocacy and improve safety outcomes because shared stories build empathy, reduce isolation, and generate practical strategies for navigating the system.
- Story-Based Systems Changemethodology: story-based_educationBy using personal patient stories and media narratives in education and dialogue, we drive systemic improvements in care because lived experiences make abstract safety issues tangible and motivate behavioral change among providers and communities.