irs program accomplishments · form 990 part iii · fy2024
What they reported doing
- #1 primary $100KTEAM PHENOMENAL HOPE PROVIDED $50,000 FOR A FEASIBILITY TRIAL FOR THE CANADIAN RIGHT VENTRICULAR ADAPTIVE (CRAVE) PLATFORM TRIAL OF THERAPIES TARGETING RIGHT VENTRICULAR FAILURE.
- #2 $548KANNUAL 2023 AND 2024 PHENOMENAL HOPE CONFERENCE: KNOWLEDGE, RESEARCH & ADVOCACY IN PH IS A SYMPOSIUM OFFERING A COMBINATION OF ORAL PRESENTATIONS, EXPERT PANEL DISCUSSIONS, AND POSTER SESSIONS IN AN ENVIRONMENT THAT FOSTERS COLLABORATION AND A DEEPER EXPLORATION OF PULMONARY HYPERTENSION PATIENT-CENTERED RESEARCH. ESTABLISHED EXPERTS, THOUGHT LEADERS, YOUNG INVESTIGATORS, AND HEALTHCARE PROVIDERS COMMITTED TO ADVANCING CLINICAL SCIENCE AND CARE IN THE FIELD OF PULMONARY HYPERTENSION ATTEND AND ARE OFFERED THE OPPORTUNITY TO SHARE ORIGINAL RESEARCH.
named programs · 5 · from sources
What they call their work
PH Awareness Month Webinars
Annual webinar series during Pulmonary Hypertension Awareness Month featuring live and pre-recorded sessions on education, advocacy, and patient resources, open to patients, caregivers, and healthcare providers
PHenomenal Hope Research Symposium
Annual symposium featuring expert presentations, panel discussions, and poster sessions on pulmonary hypertension research, bringing together clinicians, researchers, and patients to advance patient-centered science
PHun Days for PH Kiddos
Recreational events held in multiple cities for children living with pulmonary hypertension, designed to foster connection, joy, and community among young patients and families
Research Grant Program
Funds medical research initiatives and clinical trials focused on pulmonary hypertension, including grants awarded to researchers and international organizations through a competitive application process
Support Group Program
Bi-monthly virtual support group meetings via Zoom for individuals living with PH, featuring expert guest speakers on topics such as mental health, insurance, nutrition, and treatment advancements
activities · 5 groups
What they do
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Disease-Specific Clinical & Patient Education 1 activity
- Conducting educational webinars and patient panelsHosts an annual webinar series during Pulmonary Hypertension Awareness Month and ongoing educational sessions covering topics such as clinical trials navigation, emerging therapies, birth control for women with PH, and accessible summaries of current research. Also includes patient panel discussions highlighting diverse lived experiences to address disparities.
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Scientific Conference & Symposium Management 1 activity
- Hosting annual research symposium and conferenceOrganizes the annual Phenomenal Hope Conference and research symposium featuring expert panels, oral presentations, and poster sessions to advance patient-centered research in pulmonary hypertension, held in 2023 and 2024.
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Recreational and Emotional Support Programs for Children with Serious Illnesses 1 activity
- Organizing PHun Days events for pediatric patients and familiesHosts PHun Days events in multiple cities to provide recreational, safe, and supportive environments for children with pulmonary hypertension and their families, offering free access to fun activities and community-building opportunities.
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Nonprofit Capacity Building Services 1 activity
- Strengthening organizational capacityHires experienced professionals for key leadership and program roles, including a Development Manager with over 30 years of nonprofit experience and a Program Associate with background in behavioral health services, to enhance delivery of patient programs and organizational effectiveness.
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Uncategorized 2 activities
- Funding pulmonary hypertension researchProvides financial support for research initiatives related to pulmonary hypertension, including annual $50,000 grants, targeted awards such as the Lucilla Piccari PH-ILD Research Award, and funding for feasibility trials like the Canadian Right Ventricular Adaptive (CRAVE) platform trial. Research topics include sex differences, right ventricular metabolism, and interstitial lung disease associated with PH.
- Providing community support and navigational resourcesOffers financial assistance, virtual support groups held every other month via Zoom, storytelling opportunities, and community-building programs for individuals and families affected by pulmonary hypertension.
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financials · form 990 · fy2024
revenue
Total revenue$1.38M
Contributions & grants$1.02M74%
Program service revenue$00%
Investment income$13K1%
Other revenue$343K
expenses
Total expenses$898K
Program expenses86%
Admin / overhead5%
Fundraising9%
Salaries & benefits$397K
Grants paid out$108K
Largest expense lineCompensation
balance sheet
Total assets$1.29M
Cash$1.29M
Investments$0
Liabilities$5K
Net assets$1.28M
Liquid reserves17.2 mo
3 years on record · 2020–2024 · YoY revenue +54.4%
leadership · form 990 part vii · fy2024
Who runs it
paid leadership · 1
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| LESLIE ORLOVSKY | EXECUTIVE DIRECTOR | 40 | $120K |
board members · 13
- ABBY POMS — DIRECTOR
- ALLEN FARBER — DIRECTOR
- CAMM EPSTEIN — DIRECTOR
- CARL HICKS — TREASURER
- ERIC BORSTEIN — BOARD CHAIR
- ERICKA BERMAN ROSENZWEIG — DIRECTOR
- GARETH GWYN — DIRECTOR
- HARRISON FARBER MD — DIRECTOR
- JENNIFER KEELEY DNP ANP-BC — DIRECTOR
- LENISE WHITLEY — DIRECTOR
- STACEY MCCARTHY — DIRECTOR
- SUSIE MCDEVITT DNP ACNP-BC — DIRECTOR
- VIJAY BALASUBRAMANIAN MD MRCPUKFCCP — DIRECTOR
relationships · 20
Who they work with
- American Lung Association Partner — Collaborates with the American Lung Association to advocate for and support individuals with pulmonary hypertension.
- Ball Arena Partner — Host venue for PHun Day event during a Colorado Avalanche game.
- Bayer Partner — Provides medical education expertise through speaker participation in contraceptive awareness webinar.
- Brazilian Pulmonary Hypertension and Related Diseases Association Partner — Recipient of a $50,000 grant from Team Phenomenal Hope to support medical research for pulmonary hypertension treatments or a cure.
- Bridgestone Arena Partner — Host venue for PHun Day event during a Nashville Predators game.
- CVS Specialty Partner — Partners with clinical educators from CVS Specialty to lead support group sessions on topics such as intimacy, insurance navigation, and PH management.
- Gourmet Diva, LLC Partner — Collaborates with Chef Keesha to deliver cooking demonstrations for PH patients.
- LMBYL Partner — Collaborative partner organization serving pulmonary hypertension patients, jointly supported by Team PHenomenal Hope.
- Legoland Discovery Center Partner — Host venue for PHun Day event in Westchester.
- Liquidia Partner — Collaborates with Liquidia employees to connect pulmonary hypertension research with patient experiences during PH Awareness Month.
- Liquidia Partner — Liquidia employees participate in events alongside pulmonary hypertension patients
- Mental Health Association of Monmouth Partner — Collaborates by providing caregiver support and mental health resources through webinar presentations.
- National Institute of Health (NIH) Government — Referenced as a key resource for clinical trial information in educational programming.
- PH associations Partner — Collaborates with PH associations to disseminate campaign videos within and beyond the PH community.
- Pulmonary Hypertension Association Partner — Partners with the Pulmonary Hypertension Association by funding research and supporting shared goals for patient advocacy and education.
- Stanford Health Partner — Provides expert presenters for educational webinars on PH care and support services.
- The Ohio State University Wexner Medical Center Partner — Co-presents webinars on navigating NIH resources and clinical trials from both clinical and patient perspectives.
- University of Alberta Partner — Provides expert presentation on current PH research, including the CRAVE trial, through Team PHenomenal Hope webinars.
- University of New Mexico Department of Internal Medicine Partner — Collaborates with Team PHenomenal Hope through staff participation in patient panel moderation.
- phaware Partner — Collaborates with phaware to elevate patient stories and raise awareness about pulmonary hypertension through technology and storytelling.
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.
- Event-Based Movement Building 113 orgsmethodology: event-driven advocacyBy leveraging endurance events and creative campaigns, we raise awareness and funds because participatory activism deepens supporter commitment and translates personal effort into collective impact.shared approach: Event-Based Fundraising →
- Community as Clinical Adjunctmethodology: community_supportBy creating safe social, recreational, and virtual environments for patients and families, we improve quality of life because belonging and shared experience mitigate the psychosocial burden of chronic illness.
- Lived Experience-Driven Advocacy & Researchmethodology: health_equity_through_lived_experienceBy elevating patient narratives and convening experts alongside emerging investigators, we advance equitable research and care because diverse, experiential input identifies systemic gaps and generates more responsive solutions.
- Patient-Centered Care Modelmethodology: patient-centered_careBy centering the emotional and lived experience of individuals with pulmonary hypertension in support programs, we improve well-being and engagement because authentic empathy fosters trust, reduces isolation, and increases program relevance.