AliveAndKickn

What AliveAndKickn does

AliveAndKickn is a U.S.-based nonprofit patient advocacy organization founded in 2012 by Dave Dubin, a three-time Lynch cancer survivor, and Robin Dubin, focused on improving outcomes for individuals and families affected by Lynch syndrome through research, education, and screening. Headquartered at PO Box 38 in Haworth, New Jersey with 1-10 employees, the organization operates a Wix-hosted educational website, a podcast, video-based community discussions, and an annual Living with Lynch patient workshop. Its core technology asset is the HEROIC Mosaic Research Community, a patient registry built on the Genetic Alliance platform through a Robert Wood Johnson Foundation grant that aggregates patient data for downstream research, supplemented by the Lynch Syndrome Research Accelerator and the LS Community Research Fund.

The organization serves four primary segments: Lynch syndrome patients, survivors and previvors; affected family members; healthcare providers; and caregivers/support networks. Distribution is community- and event-led, relying on social media campaigns, the annual Blue Genes Bash gala, participation in NYRR races (including an official 2026 United Airlines NYC Half charity partnership), Get Your Rear in Gear events, the LivingWithLynch.org microsite co-built with the Colon Cancer Coalition, peer mentor matching through Imerman Angels, and a Medical Advisory Board drawn from NYU Langone, City of Hope, Mount Sinai, Weill Cornell, and UCLA.

Revenue is donation- and event-driven, with no disclosed pricing for services (educational resources, peer support, and registry access are provided free). Supplementary revenue comes from merchandise sales through Kim Satin Jewelry and Piti Printing partnerships, where 30% of proceeds are donated to the organization, and from corporate sponsorships such as Promega Corporation. Financial data is not publicly disclosed, and the organization operates without venture capital, structured funding rounds, or disclosed institutional endowments beyond the historical RWJ grant.

Name

AliveAndKickn

Legal name

AliveAndKickn

Website

https://aliveandkickn.org

Company type

Private

Founded year

2012

Operating status

Operating

Headcount range

1–10 employees

Short description

AliveAndKickn is a U.S. nonprofit founded in 2012 that serves individuals and families affected by Lynch syndrome through education, a patient registry, peer support, screening guidance, and community events. Revenue is donation- and event-driven, supplemented by merchandise partnerships and corporate sponsorships.

Ownership category

akta.pro rank

Product category

Hereditary Cancer Patient Advocacy Nonprofit

NAICS

Individual and Family Services (6241), Other Individual and Family Services (624190)

SIC

Services-Social Services (8300), Services-Health Services (8000)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industries

Patient Registries & Chronic Disease Registry Analytics (HLACAHAH), Family Caregiver Coaching, Education & Support (HSABAIAI)

Keywords

• Lynch syndrome education
• Hereditary cancer research
• Patient advocacy services
• Genetic cancer screening
• Nonprofit patient support

Headquarters

HQ city

Haworth

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

Revenue model

1. Donations: Primary revenue stream through individual donations, corporate sponsorships, and fundraising events such as the Blue Genes Bash gala and race team participation.
2. Merchandise Sales: Sale of custom-designed AliveAndKickn merchandise including jewelry by Kim Satin Jewelry (30% of proceeds donated) and branded masks through Piti Printing partnership.

Go-to-market motion2 records

Distribution channels4 records

Marketing channels9 records

Core offering

AliveAndKickn is a 501(c)(3) nonprofit organization that improves the lives of individuals and families affected by Lynch syndrome through patient-driven research, education, awareness, and screening programs. It operates the HEROIC Mosaic Research Community patient registry, funds research, hosts community events and workshops, and provides peer-to-peer support and educational resources to patients, previvors, caregivers, and clinicians.

Product overview

AliveAndKickn is a nonprofit organization dedicated to improving the lives of individuals and families affected by Lynch syndrome and associated cancers through research, education, and screening. The organization operates a comprehensive platform consisting of an educational website with downloadable resources and guidelines, a podcast series, video-based community discussions, and a peer support program through Imerman Angels. Key initiatives include the Lynch Syndrome Research Accelerator with patient registry, the LivingWithLynch.org microsite (a collaboration with the Colon Cancer Coalition), the annual Blue Genes Bash fundraising gala, the Team AliveAndKickn racing program, and the LS Community Research Fund. The organization also provides tools for finding clinics, genetic testing information, and a social media toolkit for Lynch Syndrome Awareness Day.

Differentiator

Problem solved

Functional benefit

Products and services

• HEROIC Mosaic Research Community A research patient registry collecting clinical and survey data from Lynch syndrome patients, previvors, family members, and caregivers to accelerate research into hereditary cancers.
• LivingWithLynch.org An educational microsite offering information, resources, and personal stories for those living with Lynch syndrome.
• Blue Genes Bash Gala An annual fundraising and awareness gala held by AliveAndKickn to support its programs and research.
• Living with Lynch Patient Workshop Educational workshop for Lynch syndrome patients, families, clinicians, and researchers.
• Living with Lynch Community Conversations Virtual peer-support meetings connecting Lynch syndrome patients, previvors, and family members.
• Peer-to-Peer Support (Imerman Angels Partnership) One-on-one cancer peer-mentorship program offered in partnership with Imerman Angels for those affected by Lynch syndrome.
• AliveAndKickn Podcast Podcast discussing Lynch syndrome topics with clinicians, researchers, patients, and family members.

Quantifiable outcome

• 1 in 279 Americans have Lynch syndrome, yet 95% are undiagnosed
• +1 more outcomes

Named customers5 records

Segments4 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature1 record

Partnerships

Nine partnerships are on record, tiered minor, major and core.

• Piti PrintingminorGTM or Marketing Partner · 1 July 2020AliveAndKickn partnered with Piti Printing to produce and sell branded masks. 30% of proceeds from mask sales go to support the organization.
• LivingWithLynch.orgmajorStrategic or Co-development Partner · 1 March 2020Co-launched with Colon Cancer Coalition, LivingWithLynch.org is a one-of-a-kind resource featuring videos and photos of patients sharing how their Lynch syndrome diagnosis impacts them, their family, and their outlook on the future. The microsite offers voices of hope in the face of a Lynch syndrome diagnosis.
• Promega CorporationmajorStrategic or Co-development Partner · 1 November 2019Promega Corporation sponsored the November 2019 Living with Lynch patient workshop in Houston, where 13 Lynch-positive patients gathered to connect with experts and each other. The experience was captured at LivingWithLynch.org.
• Kim Satin JewelryminorGTM or Marketing Partner · 1 December 2018Kim Satin Jewelry creates custom-designed, handmade AliveAndKickn jewelry sold through the organization's store. 30% of proceeds from jewelry sales go to support AliveAndKickn's mission.
• Biden Cancer InitiativemajorStrategic or Co-development Partner · 1 September 2018AliveAndKickn's HEROIC Mosaic Research Community was selected as one of 57 Commitments at the Biden Cancer Summit. The organization was one of just nine selected to meet with Vice President Biden, who subsequently mentioned AliveAndKickn in his speeches about cancer research and registry efforts.
• Imerman AngelscoreStrategic or Co-development PartnerAliveAndKickn partnered with Imerman Angels to provide peer-to-peer support specifically to the Lynch syndrome community. The partnership connects cancer fighters, survivors, previvors, caregivers, and family members with mentor angels who have similar experiences. The service is free and helps anyone touched by hereditary cancer at any stage.
• Colon Cancer CoalitioncoreStrategic or Co-development PartnerAliveAndKickn and the Colon Cancer Coalition announced a collaborative relationship to expand reach and provide Lynch syndrome resources to the colorectal cancer community. AliveAndKickn serves as the go-to genetic resource for Lynch syndrome, while both organizations work to increase access to screening and early detection.
• Genetic AlliancecoreTechnology or IntegrationAliveAndKickn worked with Genetic Alliance to develop their patient registry on their platform through an RWJ (Robert Wood Johnson) grant. The registry enrolls Lynch patients to provide data for research purposes.
• Collaborative Group of the Americas - Inherited Gastrointestinal Cancer (CGA-IGC)minorStrategic or Co-development PartnerCGA-IGC provides educational podcast series led by top Lynch syndrome clinical experts that AliveAndKickn shares with its community.

Scale indicators2 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• FORCE (Facing Our Risk of Cancer Empowered): National nonprofit focused on individuals and families affected by hereditary cancers including Lynch syndrome. Comparable in advocacy, education, peer support, and research-funding model, with a broader hereditary-cancer scope.
• Imerman Angels: Existing AliveAndKickn partner providing 1:1 cancer peer mentor matching. Closely aligned in peer-support mission and patient-advocacy model, though broader (all cancers, not hereditary).
• Colon Cancer Coalition: Existing AliveAndKickn partner; co-launched LivingWithLynch.org. Comparable as a CRC-focused nonprofit running awareness races and grassroots fundraising, with overlapping patient-community mission.
• Lynch Syndrome International: Another nonprofit solely dedicated to Lynch syndrome awareness, education, and support. Most direct comparable in mission and audience, serving the same patient and family community.

Broad incumbents

• National Organization for Rare Disorders (NORD): Umbrella rare-disease advocacy organization that supports condition-specific patient groups. Comparable in nonprofit advocacy and patient-registry enablement, though not Lynch-specific.
• Fight Colorectal Cancer: Larger colorectal cancer advocacy organization that addresses Lynch syndrome as part of its hereditary CRC work. Overlaps in awareness, screening advocacy, and patient-community programming but is broader in scope.
• Colorectal Cancer Alliance: Largest US colorectal cancer-focused nonprofit; covers Lynch syndrome within hereditary CRC programming. Comparable in screening advocacy, patient support, and research funding, with substantially larger scale.

Emerging players

• Bright Pink: Nonprofit focused on hereditary breast and ovarian cancer risk. Comparable niche model targeting previvors and high-risk patients, with overlapping education and genetic-counseling-adjacent content.

Others

• Genetic Alliance: Existing AliveAndKickn technology partner powering the HEROIC Mosaic patient registry. Comparable as a nonprofit supporting patient-driven research and disease registries across multiple conditions.
• Collaborative Group of the Americas on Inherited Gastrointestinal Cancer (CGA-IGC): Existing AliveAndKickn partner; professional medical society for inherited GI cancer clinicians. Comparable in mission alignment around hereditary GI cancer, though professional rather than patient-facing.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/alive_and_kickn
• Facebookfacebook.com/AliveAndKickn
• LinkedInlinkedin.com/company/aliveandkickn
• Instagraminstagram.com/aliveandkickn/?igshid=NTdlMDg3MTY%3D

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

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

Frequently asked questions about AliveAndKickn