irs program accomplishments · form 990 part iii · fy2024
What they reported doing
- #1 primary $96KPATIENT: HPVACF PROVIDES ROBUST RESOURCES, INFORMATION AND COMMUNITY INITIATIVES TO ANAL CANCER PATIENTS AND CAREGIVERS. HPVACF EDUCATIONAL AND COMMUNITY FORUMS BRING PATIENTS, CAREGIVERS AND PROVIDERS TOGETHER TO EMPOWER EACH OTHER AND BECOME INFORMED. TO ADDRESS ISOLATION IN THE COMMUNITY, HPVACF ESTABLISHED THE FIRST FORMAL ANAL CANCER PEER-PEER SUPPORT PROGRAM THAT MATCHES THRIVERS AND CAREGIVERS WITH PEERS WHO HAVE EXPERIENCED ANAL CANCER.
- #2 $11KRESEARCH: HPVACF PROVIDES FUNDING TO ACCELERATE NEW, EFFECTIVE DRUGS TO TREAT HPV-RELATED CANCERS, INCLUDING ANAL CANCER, AND TO BUILD THE SCIENTIFIC/MEDICAL INFRASTRUCTURE TO CREATE BETTER TREATMENT AND PREVENTION METHODS. THIS PROGRAM HAS CREATED THE FIRST ANAL NEOPLASIA MEDICAL SOCIETY, AND FUNDED GROUND-BREAKING RESEARCH TO FIND A CURE FOR ANAL CANCER AND HPV-RELATED CANCERS, ESPECIALLY IN THE FIELD OF IMMUNOTHERAPY.
named programs · 3 · from sources
What they call their work
Anal Cancer Treatment Education
Provides detailed, stage-specific information on treatment options, side effects, and clinical trials for patients and providers
Peer to Peer Support Program
Matches anal cancer survivors and caregivers with peers for emotional and informational support
Research Roadmap Initiative
Funds and accelerates research into new treatments for anal and HPV-related cancers, with focus on immunotherapy and genomic research
activities · 5 groups
What they do
-
Cancer Research Funding 2 activities
- Conducting and supporting clinical research on anal cancer treatmentsSupports and conducts scientific research to improve anal cancer treatment, including co-funding studies on Nivolumab for metastatic disease, conducting a multi-center trial comparing chemotherapy regimens, and funding research demonstrating reduced cancer progression with HSIL treatment in HIV-positive individuals.
- Funding research on HPV-related and anal cancersProvides financial support for research projects focused on developing new drugs, improving treatment protocols, and advancing prevention methods for HPV-related cancers, with an emphasis on immunotherapy and less toxic therapies.
-
-
Cancer Peer Support & Wellness Programs 2 activities
- Peer-to-peer support program for anal cancer patients and caregiversOperates a free peer-to-peer support program that connects individuals diagnosed with anal cancer, as well as their caregivers, with trained volunteer survivors and caregiver volunteers to reduce isolation and increase access to emotional and practical support.
- Sharing personal narratives and lived experiencesMaintains a collection of personal stories called "Thriver Stories" to share lived experiences of individuals affected by anal cancer, fostering community connection and emotional support.
-
-
Patient and Researcher Conferences 1 activity
- Hosting patient education events and conferencesOrganizes and hosts educational forums, summits, and conferences featuring expert presentations on anal cancer topics such as treatment options and management of side effects, with recorded sessions made publicly available via YouTube.
-
-
Cancer Patient Financial and Practical Support 1 activity
- Provision of educational resources and information on anal cancerProvides accessible educational materials on anal cancer, including treatment options, surgical care, side effect management, and ERAS protocols, through a Medical Resources page and online forums to support patient understanding and decision-making.
-
-
Uncategorized 2 activities
- Co-developing clinical guidelines for anal cancer careCollaborated with the National Comprehensive Cancer Network to co-develop patient guidelines covering diagnosis, treatment, side effects, and survivorship in anal cancer, improving standards of care.
- Establishing professional medical infrastructure for anal neoplasiaFounded the first formal medical society dedicated to anal neoplasia to advance scientific knowledge, professional collaboration, and medical infrastructure in the field.
-
financials · form 990 · fy2024
revenue
Total revenue$310K
Contributions & grants$294K95%
Program service revenue$9K3%
Investment income$6K2%
Other revenue$0
expenses
Total expenses$332K
Program expenses80%
Admin / overhead11%
Fundraising9%
Salaries & benefits$158K
Grants paid out$35K
Largest expense lineCompensation
balance sheet
Total assets$1.02M
Cash$822K
Investments$155K
Liabilities$3K
Net assets$1.02M
Liquid reserves35.3 mo
3 years on record · 2020–2024 · YoY revenue -66.4%
leadership · form 990 part vii · fy2024
Who runs it
paid leadership · 1
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| JUSTINE X ALMADA | EXECUTIVE DIRECTOR | 40 | $61K |
board members · 3
- CAMILLE ALMADA — VICE PRESIDENT & TREASURER
- CHRISTIAN LEVETT — DIRECTOR
- TRISTAN ALMADA — PRESIDENT
relationships · 20
Who they work with
- American Cancer Society Partner — Collaborates by referencing and directing individuals to the American Cancer Society for additional resources on colostomy care and managing intimacy with an ostomy.
- American Cancer Society Partner — Collaborates with the American Cancer Society by referencing their educational materials on anal cancer staging.
- American Society of Colon and Rectal Surgeons (ASCRS) Partner — References ASCRS as a resource for detailed information on enhanced recovery after surgery programs.
- Anal Cancer Foundation Network — Refers to itself as the provider of the Peer to Peer Support Program, indicating organizational ownership of the service.
- Anal Neoplasia Medical Society Partner — Founded and supported by the foundation to build medical infrastructure for anal cancer.
- Cancer Research UK Partner — References patient support resources from Cancer Research UK for managing cancer-related fatigue.
- Colostomy Association Partner — Collaborates by directing UK-based individuals to the Colostomy Association for support and information on managing life with an ostomy.
- International Anal Neoplasia Society Partner — Aligns with IANS recommendations for anal cancer screening in high-risk populations.
- MD Anderson Cancer Center Partner — Collaborated on research related to Nivolumab for metastatic anal cancer.
- MD Anderson Cancer Center Partner — References MD Anderson Cancer Center as a source for enhanced recovery after surgery information.
- Macmillan Cancer Support Partner — Recommends Macmillan Cancer Support as a source of guidance for talking to children about cancer.
- Memorial Sloan Kettering Partner — Collaborates by referencing clinical resources from Memorial Sloan Kettering for managing radiation side effects.
- NHS Government — Directs UK-based users to the NHS page on enhanced recovery for additional information.
- National Cancer Institute Network — References staging criteria for anal cancer defined by the National Cancer Institute.
- National Comprehensive Cancer Network Network — Cited as a source for treatment guidelines, indicating alignment with NCCN recommendations.
- National Comprehensive Cancer Network Partner — Collaborated to create patient guidelines for anal cancer diagnosis, treatment, and survivorship.
- The Anal Cancer Foundation Partner — Primary organization providing information and support for anal cancer patients.
- Thriver Summit Network — Hosted the 2022 Thriver Summit where the RESET recovery initiative was developed.
- US National Comprehensive Cancer Network Government — Produces and updates yearly anal cancer treatment guidelines referenced by the foundation.
- United Ostomy Associations of America, Inc. (UOAA) Partner — Partners by referring individuals to UOAA for comprehensive guidance on living with an ostomy, including dietary management and intimacy.
strategies · 5
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.
- HPV Education and Risk-Stratified Screening to Prevent Anal Cancermethodology: hpv_education_for_preventionBy promoting public understanding of HPV as the primary cause of anal cancer and advocating for risk-stratified screening, we enable earlier detection and intervention because informed at-risk populations are more likely to engage in preventive care and timely treatment.
- Multidimensional Recovery Framework for Post-Treatment Supportmethodology: multidimensional_recoveryBy integrating pain management, pelvic floor exercise, peer and professional support, nutrition, and sexual health therapy into a structured recovery model (RESET), we improve post-treatment quality of life because holistic, coordinated care addresses the full spectrum of patient needs.
- Patient Empowerment Through Education and Shared Decision-Makingmethodology: patient_empowerment_through_educationBy providing clinical-grade educational resources and facilitating access to expert-led forums, we enable shared decision-making and patient autonomy because informed patients are better equipped to navigate diagnosis, treatment, and recovery with confidence.
- Peer-Support Networks to Reduce Isolation and Improve Well-Beingmethodology: peer_supportBy connecting patients and caregivers with trained survivor and caregiver volunteers through structured peer-to-peer networks, we improve emotional well-being and treatment navigation because shared lived experience reduces isolation and builds trust in guidance.
- Research Investment to Accelerate Treatment Innovationmethodology: research-acceleration-through-fundingBy funding targeted research and revitalizing stalled therapeutic pipelines, we advance safer and more effective treatments for anal cancer because dedicated research infrastructure accelerates the development and clinical adoption of improved therapies.