irs program accomplishments · form 990 part iii · fy2023
What they reported doing
- #1 primary $33KRESEARCH TO INCREASE SCIENTIFIC KNOWLEDGE ABOUT THE LONG- TERM DELIVERY OF NUTRITIONAL SUPPORT.
named programs · 5 · from sources
What they call their work
Advocacy Initiatives
Policy and systems advocacy to improve access, safety, and reimbursement for home nutrition support services and supplies
Annual Conference
Gathering of patients, caregivers, clinicians, and industry partners to share experiences, research, and innovations in home nutrition support
Community Connections
Regular virtual and in-person events that foster peer support and information sharing among patients, caregivers, and clinicians
Feeding Tube Awareness Week
Annual initiative to increase understanding of tube feeding and support for individuals who rely on it
HPN Awareness Week
National awareness campaign to educate the public and healthcare providers about home parenteral nutrition
activities · 11 groups
What they do
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Professional Conference Support 1 activity
- Administering travel grants for conference attendanceOffers travel grants to help individuals overcome financial or logistical barriers to attending the Oley national conference, enabling broader participation in educational and community-building events.
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Healthcare Policy Advocacy 1 activity
- Advocating for policy change and improved care in home nutrition supportAdvocates for policy change and improved care standards in home parenteral and enteral nutrition, informed by patient experiences and integrated perspectives from patients, caregivers, and clinicians.
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Volunteer-Driven Residential Care Support 1 activity
- Building volunteer and community leadership capacityMaintains a national network of over 60 patient and caregiver volunteers who conduct outreach, lead local support groups, and provide education. Offers two volunteer pathways—one for patients and caregivers and one for clinicians—to support mission and operations.
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Biomedical Research and Innovation 1 activity
- Conducting patient-centered research on home nutrition supportEngages in research to advance scientific understanding of long-term nutritional support delivery and collaborates on patient-centered research, education improvement, and policy change informed by the lived experience of patients on home parenteral and enteral nutrition.
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Public Awareness and Educational Outreach 1 activity
- Distributing outreach materials to expand program awarenessProvides downloadable flyers in English and Spanish to help members and supporters connect others to Oley’s resources and community, supporting broader awareness and engagement.
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Endowment and Gift Fund Management 1 activity
- Establishing sustainable funding through endowmentEstablished an endowment fund in 2024 to generate sustainable income for long-term program and operational support, enhancing financial stability.
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Patient and Researcher Conferences 1 activity
- Hosting national and regional educational conferences and meetingsHosts an annual three-day national conference with over 500 attendees and organizes 2 to 4 regional one-day meetings per year, each serving 50 to 100 attendees, to provide education and community support for individuals on home nutrition support.
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Member-Exclusive Resource Access 1 activity
- Offering free individual and professional membership with access to support and updatesProvides free membership to patients, caregivers, clinicians, and industry professionals, granting access to newsletters, updates, and community resources. The organization supports a community of over 27,000 members, primarily individuals on home nutrition support therapy and their caregivers, along with clinicians and industry professionals.
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Durable Medical Equipment Loan Programs 1 activity
- Operating an enteral nutrition supplies donation and sharing programManages an Enteral Donation Program that enables members to share or request enteral nutrition supplies through a facilitated platform, supporting access to essential equipment and materials.
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Nonprofit Organizational Management 1 activity
- Providing administrative and operational support servicesManages member databases, handles incoming calls, and supports office operations with a small staff and volunteers during standard business hours, excluding major holidays.
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Disease-Specific Clinical & Patient Education 1 activity
- Providing educational resources and publications for home nutrition support usersOffers free access to educational resources, including webinars, a quarterly consumer newsletter (LifelineLetter), and digital and print materials, through a member registration system for individuals using home IV or tube feeding. The organization updated its educational website in 2015 to serve as a centralized resource, supported by grant funding from Shire, Inc.
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financials · form 990 · fy2023
revenue
Total revenue$1.30M
Contributions & grants$1.11M85%
Program service revenue$142K11%
Investment income$49K4%
Other revenue$0
expenses
Total expenses$1.01M
Program expenses63%
Admin / overhead18%
Fundraising19%
Salaries & benefits$618K
Grants paid out$0
Largest expense lineCompensation
balance sheet
Total assets$2.76M
Cash$833K
Investments$1.76M
Liabilities$69K
Net assets$2.69M
Liquid reserves30.7 mo
5 years on record · 2019–2023 · YoY revenue +60.7%
leadership · form 990 part vii · fy2023
Who runs it
paid leadership · 1
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| BETH GORE PHD | CEO | 40 | $112K |
board members · 9
- DAVID MERCER MD — Trustee
- JOHN MAHALCHAK — Trustee
- KELLY TAPPENDEN PHD RD — President
- LISA EPP RDN — Trustee
- LYN HOWARD MB — Trustee
- MANPREET MUNDI MD — Trustee
- SHIRLEY HUANG MD — Vice President
- STEVE ATKINSON — Treasurer
- VANESSA KUMPF — Secretary
relationships · 17
Who they work with
- Albany Medical Center Government — Hosts The Oley Foundation's operations and shares physical and mailing addresses.
- Albany Medical Center Government — Hosts the Oley Foundation's mailing and physical address as of 2023.
- Albany Medical Center Partner — Hosts the Oley Foundation's mailing and physical address as of 2023.
- Alcresta Therapeutics Partner — Industry partner supporting Oley Foundation’s mission to improve lives of individuals with complex nutrition needs.
- Amerita Specialty Infusion Partner — Industry partner collaborating with Oley Foundation to advance access to superior care and quality of life for HPEN patients.
- AvevoRx Partner — Industry partner united with Oley Foundation to improve lives of those on home nutrition support through education and community resources.
- Fresenius Kabi Partner — Industry partner supporting Oley Foundation’s consumer advocacy, community building, and education efforts for parenteral and enteral nutrition patients.
- Nestlé Health Science Partner — Industry partner supporting Oley Foundation to enhance education, advocacy, and resources for individuals on enteral nutrition and tube feeding.
- Option Care Health Partner — Industry partner sharing Oley Foundation’s commitment to empowering patients on home nutrition support through compassionate, reliable care.
- Protara Therapeutics Partner — Industry partner working with Oley Foundation to align research with community needs and advance patient-centered outcomes.
- Rockfield Medical Devices Partner — Industry partner collaborating with Oley Foundation on user research to guide development and FDA clearances for enteral feeding innovations.
- Shire, Inc. Funder — Provided a generous grant to support the 2015 website update.
- Shire, Inc. Funder — Provided a generous grant to update the Oley Foundation website in 2015.
- Shire, Inc. Funder — Provided a grant to support the 2015 update of The Oley Foundation's website.
- Shire, Inc. Funder — Provided a grant to update the Oley Foundation website in 2015.
- Shire, Inc. Partner — Provided a grant to support the 2015 update of the Oley Foundation website.
- Zealand Partner — Industry partner collaborating with Oley Foundation to support and empower patients with complex nutritional needs.
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.
- Integrated Support Modelmethodology: integrated_support_modelBy combining advocacy, education, peer support, and innovation into a unified approach, the organization improves quality of life for individuals on home nutrition therapy because addressing multiple dimensions of patient experience produces more holistic and sustainable outcomes than isolated interventions.
- Patient-Insights Led Innovationmethodology: patient_insights_driven_researchBy grounding research and innovation in patient-identified priorities, the organization ensures that advancements in home nutrition therapy are clinically relevant and user-centered because solutions shaped by lived experience are more likely to be adopted and effective in real-world settings.
- Peer-Driven Connection and Supportmethodology: peer_support_networkBy fostering peer-to-peer and peer-professional connections, the organization reduces isolation and builds confidence among patients and families because shared lived experience creates trust and enables practical, emotionally resonant guidance that clinical channels alone cannot provide.