ALK Positive

What ALK Positive does

ALK Positive is a 501(c)(3) patient-driven nonprofit organization founded in 2015 and incorporated in 2017, headquartered in Atlanta, Georgia. It serves patients with ALK-positive cancers — a rare molecular subset of cancer driven by rearrangements in the anaplastic lymphoma kinase gene — and has grown its community to more than 8,000 members across 55+ countries. The organization operates a portfolio of patient-facing programs including a Second Opinion Program delivered through 20+ partner academic cancer centers, a Clinical Trial Finder, the ALKtALK educational series, a Decision Aid tool, a Healing Arts program, and an online peer support community.

The business model is nonprofit: revenue is generated through individual donations, foundation grants, corporate partnerships, and increasingly cryptocurrency donations via Gemini Giving Block. Funding is deployed into patient services and research grants; the organization states it has committed $10.8 million to ALK-positive cancer research since inception. Strategic grant-making relationships include the LUNGevity Foundation (up to $1.5 million, 2022), the Bonnie J. Addario Lung Cancer Foundation ($500,000, 2020), and academic research collaborations with the University of Michigan Rogel Cancer Center (Judith Tam ALK Lung Cancer Research Initiative), Dana-Farber (Young Lung Cancer Study), and 23andMe (lung cancer genetics study).

Governance is led by Executive Director Dr. Ken Culver and a Scientific Advisory Board drawn from leading US cancer centers (Memorial Sloan Kettering, MD Anderson, Dana-Farber, University of Michigan). The organization holds the Candid Gold Seal of Transparency and a 4-star Charity Navigator rating, indicating strong third-party validation of operational and financial transparency. Revenue is not publicly disclosed; based on disclosed research commitments, foundation grant sizes, and small staff footprint, annual support is estimated in the $5M–$10M range, though precision is limited.

Name

ALK Positive

Legal name

ALK Positive Inc.

Website

https://alkpositive.org

Company type

Private

Founded year

2017

Operating status

Operating

Headcount range

1–10 employees

Short description

ALK Positive is a 501(c)(3) patient-driven nonprofit serving patients with ALK-positive cancers across 55+ countries through second-opinion programs, a clinical trial finder, educational content, and research grants totaling $10.8M since 2017.

Ownership category

akta.pro rank

Headquarters

HQ city

Atlanta

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others, Infrastructure

Revenue model

1. Individual Donations: ALK Positive relies primarily on individual donations from patients, caregivers, family members, and supporters affected by ALK+ cancer. The organization runs fundraising campaigns including the annual #FuelTheCure campaign and accepts one-time and recurring donations via its website.
2. Research Grants and Partnerships: The organization receives funding through research grants and partnerships. For example, LUNGevity Foundation partnered with ALK Positive to fund up to $1.5 million for lung cancer research projects targeting ALK-positive lung cancer. Additional funding comes from the Richard Tam Foundation for the Judith Tam ALK Lung Cancer Research Initiative at University of Michigan.
3. Corporate Partnerships: ALK Positive receives support through corporate matching gift programs, cryptocurrency donations, stock donations, and planned giving. The organization partners with pharmaceutical companies for educational initiatives and clinical trial awareness.
4. Planned Giving and Estate Gifts: The organization offers planned giving options including bequests through FreeWill partnership, Qualified Charitable Distributions (QCDs) from IRAs for donors 70½ or older, and other legacy giving vehicles.

Go-to-market motion3 records

Distribution channels5 records

Marketing channels11 records

Core offering

ALK Positive is a 501(c)(3) patient-driven nonprofit that delivers free support services, expert education, clinical trial navigation, and second-opinion access to the global ALK-positive cancer community. It funds ALK+ research through grants and partnerships (committing $10.8 million since 2017) and operates educational speaker series (ALKtALK), wellness programs (Healing Arts), and patient-focused research initiatives. The organization serves 8,000+ members across 55+ countries, connecting patients and care partners with ALK+ specialists and cutting-edge clinical trials.

Product overview

ALK Positive is a patient-driven nonprofit organization (501(c)(3)) offering a portfolio of support services, educational programs, and research initiatives for the ALK-positive cancer community. The core offerings include the Patient-Focused Research Programs that enable patients to contribute to studies on ALK+ cancer; the Second Opinion Program that connects patients with expert oncologists; the Clinical Trial Finder tool for finding relevant studies; the ALKtALK educational speaker series; Healing Arts wellness sessions; and the Decision Aid tool. These programs are complemented by the online support community, newsletter communications, and Doctor Discussion Guide resources. Together, these services form a comprehensive ecosystem supporting patients from diagnosis through treatment and ongoing care.

Differentiator

Problem solved

Functional benefit

Products and services

• Second Opinion Program Program that connects eligible ALK-positive cancer patients with world-class medical experts for treatment reviews and second opinions at no cost to qualifying patients, with both in-person consultations at partner institutions and remote telemedicine options.
• Clinical Trial Finder Searchable clinical-trial navigation tool that helps ALK-positive patients identify relevant clinical trials based on their diagnosis, treatment history, and location, supporting informed conversations with their care teams.
• ALKtALK Flagship community speaker series featuring discussions with leading ALK experts, research teams, physicians, and mental health professionals to support, educate, and empower the ALK-positive community.
• Healing Arts Holistic wellness program offering virtual sessions including yoga, chair yoga, art therapy, book club, guided imagery, men's group, mindset reset, and specialized groups for newly diagnosed, young, and single ALK-positive patients.
• Patient-Focused Research Programs Collection of non-interventional research studies that ALK Positive facilitates, including the ALK Life Study, Young Lung Cancer Study at Dana-Farber, Judith Tam ALK Lung Cancer Research Initiative at University of Michigan, and 23andMe Lung Cancer Genetics Study.
• Decision Aid Interactive web tool that helps ALK-positive patients make informed decisions about their cancer treatment options by translating clinical information into actionable decision support.
• Online Support Community Private Facebook-based peer support community connecting over 3,500 patients and caregivers worldwide, complemented by specialized caregiver support groups.
• ALK+ Newsletter Email newsletter providing subscribers with regular updates on ALK+ cancer research, clinical trials, events, patient stories, and organizational resources.
• Doctor Discussion Guide Educational guide providing suggested questions for ALK-positive patients to ask their doctors at critical points in their care journey, supporting more productive clinical conversations.

Quantifiable outcome

• 50-90% of ALK+ patients respond well to approved ALK inhibitors once diagnosed
• +4 more outcomes

Named customers2 records

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Twelve partnerships are on record, tiered core and minor.

• LUNGevity FoundationcoreStrategic or Co-development Partner · 27 January 2022LUNGevity Foundation partnered with ALK Positive to fund up to $1.5 million for lung cancer research projects targeting ALK-positive lung cancer. The partnership aims to improve outcomes and potentially transform the disease into a manageable or curable condition. This collaboration represents a significant investment in ALK+ research funding.
• Dana-Farber Cancer InstitutecoreStrategic or Co-development PartnerPartnership for the Young Lung Cancer Study to learn about how and why lung cancer develops in people ages 45 years and younger. The study aims to identify factors related to lung cancer development, predict cancer risks, and learn about tumor changes that could affect treatment. Funded by private and public research grants.
• University of Michigan Rogel Cancer CentercoreStrategic or Co-development PartnerPartnership for the Judith Tam ALK Lung Cancer Research Initiative focused on advancing precision medicine for ALK+ NSCLC patients. The initiative aims to understand why current TKI medicines stop working over time and develop strategies to delay or prevent drug resistance. Funded by Richard Tam Foundation.
• 23andMeminorStrategic or Co-development PartnerPartnership for the 23andMe Lung Cancer Genetics Study, a patient-focused research initiative inviting ALK+ patients to participate in genetic research that may benefit the broader ALK+ community.
• Memorial Sloan Kettering Cancer CentercoreStrategic or Co-development PartnerPartner institution for the Second Opinion Program. Dr. Mark Awad, Chief of Thoracic Oncology Service at MSK, serves as one of the expert consultants providing free second opinions to eligible ALK+ patients.
• MD Anderson Cancer CentercoreStrategic or Co-development PartnerPartner institution for the Second Opinion Program. Dr. John Heymach, Chair of Thoracic/Head and Neck Medical Oncology at MD Anderson, serves as an expert consultant for the program.
• Dana-Farber Cancer Institute (Second Opinion Program)coreStrategic or Co-development PartnerPartner institution for the Second Opinion Program. Dr. Narjust Florez and Dr. Alice Shaw from Dana-Farber provide expert consultations to eligible ALK+ patients, with some remote consultation options available.
• Massachusetts General HospitalcoreStrategic or Co-development PartnerPartner institution for the Second Opinion Program. Dr. Jessica Lin and team from MGH provide expert consultations to eligible ALK+ patients.
• University of Colorado Cancer CentercoreStrategic or Co-development PartnerPartner institution for the Second Opinion Program. Dr. Ross Camidge, Dr. Tejas Patil, and Dr. Erin Schenk from UCHealth provide expert consultations, with remote options available for some physicians.
• Multiple Academic Cancer Centers (Second Opinion Program)coreStrategic or Co-development PartnerNetwork of 20+ academic cancer centers and specialists across the US and internationally participating in the Second Opinion Program, including institutions in California, Colorado, Florida, Georgia, Maryland, Massachusetts, Michigan, New York, Ohio, Oregon, Tennessee, Texas, Virginia, Washington, DC, and India. Remote consultations available for qualifying patients.
• FreeWillminorGTM or Marketing PartnerPartnership to offer free will-writing services to supporters who wish to include ALK Positive in their estate plans. FreeWill provides an easy, secure platform for planned giving.
• The Giving Block / Gemini Trust ExchangeminorGTM or Marketing PartnerCryptocurrency donation processing partnership through The Giving Block and Gemini Trust Exchange, allowing supporters to donate cryptocurrency with potential tax benefits.

Scale indicators7 records

Recent moves6 records

Expansion highlights6 records

Broad incumbents

• LUNGevity Foundation: LUNGevity is the largest lung cancer-focused nonprofit in the US and a direct research-funding partner of ALK Positive ($1.5M co-funded program). It competes for the same donor mindshare and pharma sponsorships while operating across all lung cancer subtypes, making it both a partner and the most significant broader incumbent in the space.
• GO2 Foundation for Lung Cancer: GO2 Foundation (formed from the merger of the Bonnie J. Addario Lung Cancer Foundation and Lung Cancer Alliance) is one of the largest lung cancer patient advocacy organizations. It competes for donor dollars and offers overlapping support services, screening initiatives, and research funding across all lung cancer types.
• American Lung Association: The American Lung Association is a large, established health organization addressing all lung diseases including lung cancer. It offers patient support, research funding, and advocacy across a much broader portfolio, competing for general donor dollars and institutional visibility.
• American Cancer Society: The American Cancer Society is the largest US cancer nonprofit with extensive lung cancer programs, research grants, and patient navigation services. It represents the broadest incumbent against which ALK Positive must differentiate its biomarker-specific focus.

Direct peers

• EGFR Resisters: EGFR Resisters is a patient-driven community for EGFR-positive lung cancer patients and caregivers, using the identical model to ALK Positive (Facebook community, second opinions, research funding, summit). It is the closest structural analog and the most direct substitute for biomarker-specific donor and pharma attention.
• The ROS1ders: The ROS1ders is a patient-driven nonprofit for ROS1-positive cancer patients, mirroring ALK Positive's model of community support, education, and research funding. Like ALK Positive, it is hyper-focused on a single oncogenic driver and competes for the same niche pharma partnerships and biomarker-aware donor base.
• Lung Cancer Foundation of America: Lung Cancer Foundation of America is a lung cancer patient advocacy and research-funding nonprofit. While broader than ALK Positive's mutation-specific focus, it competes for the same donor segment and has overlapping research-grant and patient-education programs.

Others

• International Association for the Study of Lung Cancer (IASLC): IASLC is the global professional society for lung cancer researchers and clinicians. It is not a direct donor competitor but is a critical peer in the ALK+ research ecosystem, hosting the World Conference on Lung Cancer and setting research priorities that shape ALK Positive's grantmaking focus.
• Cancer Research Institute: Cancer Research Institute is a major US nonprofit funding immunotherapy and cancer immunology research. It is adjacent rather than directly competitive but funds overlapping research portfolios and competes for high-net-worth donors interested in cancer research funding.

Emerging players

• KRAS Kickers: KRAS Kickers is a patient-driven nonprofit for KRAS-mutant lung cancer, structured similarly to ALK Positive with a community, research funding, and education focus. It represents the broader mutation-specific advocacy peer set that is fragmenting the niche donor and pharma attention pool.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat6 records

Key risks6 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/c/ALKLungCancer
• Facebookfacebook.com/alklungcancer
• Instagraminstagram.com/alkpositiveinc
• Xx.com/ALKLungCancer
• LinkedInlinkedin.com/company/alklungcancer

Revenue estimate

Valuation estimate

Number of profiles

Profiles17 records

Funding overview

Funding rounds2 records

Investors2 records

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M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about ALK Positive