Project Alive

What Project Alive does

Project Alive is a 501(c)(3) nonprofit organization founded in 2014 and headquartered in Knoxville, Tennessee. It was established by families affected by Hunter syndrome (Mucopolysaccharidosis II, or MPS II), a rare X-linked lysosomal storage disorder that affects roughly 500 boys in the United States and fewer than 2,000 worldwide. The organization's mission is to accelerate a cure for MPS II through research funding, regulatory advocacy, and direct support to affected families. Its programs span a Hunter Health Program, Young Leaders Advocacy, IEP Consultation, Community Chats, Helping Hands financial assistance, and Relocation Assistance for families seeking treatment access.

The organization's core activity is grant-making for MPS II gene therapy and related research. Project Alive originally funded a single gene therapy program that received FDA IND approval in 2019, but in 2023 it restructured into a multi-program external research grants portfolio, committing $250,000 in year-one grants. It maintains a patient registry through a partnership with Backpack Health, holds an FDA Patient Representative seat, and contributed to the addition of MPS II to the Recommended Uniform Screening Panel (RUSP) in 2022. Pharma partners include Denali Therapeutics, JCR Pharmaceuticals, Takeda, and Regenxbio.

Revenue is generated through individual donations, foundation grants (including a $250,000 Mark Cuban Foundation gift and a $400,000 Action For Aidan matched-funding partnership), corporate sponsorships (e.g., Petland), and fundraising events such as the Cure Within Reach Gala, the Hunter Syndrome Family Fair, and Casino Night. Credibility is supported by a Candid Platinum Transparency seal and a four-star Charity Navigator rating. The beneficiary base is essentially the entire US MPS II patient population, which functions as a near-fixed addressable market but provides very low churn once a family is engaged.

Name

Project Alive

Legal name

Project Alive

Website

https://projectalive.org

Company type

Private

Founded year

2014

Operating status

Operating

Headcount range

1–10 employees

Short description

Project Alive is a Knoxville-based 501(c)(3) nonprofit founded in 2014 that funds MPS II (Hunter syndrome) gene therapy research, regulatory advocacy, and family support programs for the approximately 500 boys affected in the United States.

Ownership category

akta.pro rank

Product category

Rare Disease Advocacy and Patient Support

NAICS

Other Individual and Family Services (624190), Voluntary Health Organizations (813212)

SIC

Services-Social Services (8300)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industries

Health & Medical Research Grantmaking Foundations (BPAGAKAL), Family & Parenting Support Services (BPAGAEAC)

Keywords

• Rare disease advocacy
• Hunter syndrome research
• Nonprofit fundraising
• Family support services
• MPS II community programs

Headquarters

HQ city

Davenport

HQ country

United States

HQ region

North America

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

1. Individual Donations: Direct donations from individuals through website, mail, phone, text-to-donate (ALIVE to 91999), Facebook, and GoFundMe platforms.
2. Corporate Sponsorships and Grants: Funding from corporate sponsors (Petland $20,000, Mark Cuban Foundation $250,000), organizational grants ($200,000 from Action For Aidan, $60,000 grant to MPS Superhero Foundation partnership), and research grants.
3. Event Fundraising: Annual events including Cure Within Reach Gala, Hunter Syndrome Family Fair and Casino Night raising $68,000, cycling events, car shows, and community fundraisers.
4. Research Grant Funding: Committed $250,000 in research grants for year one of their grants program to support MPS II research.

Go-to-market motion1 record

Distribution channels8 records

Marketing channels9 records

Core offering

Project Alive is a 501(c)(3) nonprofit organization that funds Hunter syndrome (MPS II) research and provides free community support programs, advocacy, and educational resources to affected families. It raises money through donations, grants, sponsorships, and events to advance research, support clinical trial access, and advocate for early diagnosis, including its role in adding MPS II to the federal newborn screening panel.

Product overview

Project Alive is a 501(c)(3) nonprofit organization founded by families for families with the mission to find a cure for Hunter syndrome. Rather than a technology product company, Project Alive offers a portfolio of community support programs and advocacy services including the Hunter Health program, Young Leaders Advocacy Program, IEP Consultation, Community Chats, Helping Hands, and Relocation Assistance. The organization also provides resource libraries for parents/caregivers, affected individuals, and healthcare providers, alongside research grant funding and community events such as the annual Hunter Syndrome Family Fair and Cure Within Reach Gala.

Differentiator

Problem solved

Functional benefit

Products and services

• Hunter Health Program A comprehensive program providing resources and support for individuals and families affected by Hunter syndrome.
• Young Leaders Advocacy Program An advocacy program designed to empower young leaders within the Hunter syndrome community to become effective advocates.
• IEP Consultation Free IEP advocacy services providing consultation and support for families navigating Individualized Education Programs.
• Community Chats Virtual meetups and community discussions connecting Hunter syndrome families for mutual support.
• Helping Hands A program providing assistance and support services to families affected by Hunter syndrome.
• Relocation Assistance Support services to assist families who need to relocate for clinical trial participation.
• Parent & Caregiver Resources Curated medical resources, educational tools, and supportive services for parents and caregivers navigating Hunter syndrome.
• Affected Individual Resources Resources tailored for individuals diagnosed with Hunter syndrome including medical guides and expert connections.
• Provider Resources Educational materials and clinical resources for healthcare professionals, therapists, and educators working with the Hunter syndrome community.
• Research Grants Program A grant program funding MPS II research with $250,000 committed for year one, supporting various research projects benefiting the Hunter syndrome community.
• Hunter Syndrome Family Fair Annual family event connecting families with pharmaceutical companies, healthcare providers, and support resources.
• Cure Within Reach Gala Annual fundraising gala hosted at venues such as the Georgia Aquarium to raise awareness and funds for Hunter syndrome research.

Quantifiable outcome

• MPS II added to RUSP newborn screening panel in 2022
• +3 more outcomes

Named customers6 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

14 partnerships are on record, tiered core and minor.

• MPS Superhero FoundationcoreStrategic or Co-development Partner · 10 May 2024Awarded $60,000 grant to increase support to the Hunter syndrome community. Partnership allows greater reach and collaboration on common goals of increasing awareness, funding research, and supporting families. Co-hosting virtual support groups including sibling groups and grief groups.
• Backpack HealthcoreTechnology or Integration · 13 August 2019Partnership to advance Hunter syndrome research using patient-reported data. Collaboration provides repository for aggregated, de-identified data and allows Project Alive to build upon patient outcomes work. Built the Hunter Syndrome International Patient Registry.
• Action For AidancoreStrategic or Co-development PartnerNew Hampshire-based nonprofit partnered to collaborate on scientific research, publications, and other endeavors for Hunter syndrome. Matched funds totaling $400,000 to support scientific pursuits including consensus meeting on behaviors in neurodegenerative MPS and MPS Master Class for physicians.
• Nationwide Children's HospitalcoreStrategic or Co-development PartnerFunded preclinical work and vector manufacturing for gene therapy clinical trial. Trial was originally planned to be conducted at this hospital in Columbus, Ohio. Organization funded production of gene vector for Phase I/II clinical trial.
• UNC Chapel Hill (Muenzer MPS Research and Treatment Center)coreStrategic or Co-development PartnerTrial moved to UNC Chapel Hill after stalling at Nationwide Children's Hospital. Dr. Kim Stephens now serves as Executive Director of the Muenzer MPS Research and Treatment Center. Holds IND for the gene therapy drug.
• Denali TherapeuticsminorOthersPharmaceutical company conducting clinical trials for Hunter syndrome treatment. Participated in Family Fair providing information about their drugs.
• JCR PharmaceuticalsminorOthersPharmaceutical company providing treatments for MPS disorders. Participated in Family Fair event.
• TakedaminorOthersPharmaceutical company involved in Hunter syndrome treatments. Participated in Family Fair event.
• RegenxbiominorOthersBiotechnology company conducting gene therapy clinical trials for Hunter syndrome. Participated in Family Fair.
• Children's Hospital of Orange County (CHOC)minorStrategic or Co-development PartnerFeatured as speaker at Family Fair. Specialists participated in afternoon educational sessions.
• Beyond BlindnessminorOthersOrange County nonprofit agency that provided free childcare during Casino Night event, allowing parents to participate.
• Children's Hospital of Philadelphia (CHOP)minorStrategic or Co-development PartnerHospital where Sebastian received gene therapy through RGX in May 2023.
• National MPS SocietycoreStrategic or Co-development PartnerProject Alive works closely with National MPS Society and other Hunter syndrome groups to save and improve lives of those affected by the disease.
• FDAcoreOthersMelissa Hogan serves as FDA Patient Representative and on CTTI Patient Engagement Collaborative. Worked to get MPS II added to RUSP.

Scale indicators9 records

Recent moves8 records

Expansion highlights5 records

Broad incumbents

• National Organization for Rare Disorders (NORD): The largest US umbrella rare-disease advocacy organization. Operates broadly across hundreds of rare conditions rather than specializing in MPS II, but competes for the same federal policy influence and corporate philanthropy pool.
• Global Genes: Rare disease advocacy organization that awarded Project Alive's founder the 2018 RARE Champion of Hope. Comparable mission around rare-disease awareness and empowerment but operating across all rare conditions rather than a single disease.
• EveryLife Foundation for Rare Diseases: DC-based rare disease policy advocacy organization focused on accelerating biotech innovation for rare diseases. Operates in the same regulatory-advocacy lane as Project Alive but at the industry-policy level across all rare conditions.

Direct peers

• National MPS Society: The largest US nonprofit serving all MPS disorders including MPS II (Hunter syndrome). Project Alive works closely with the National MPS Society, but the National MPS Society is broader in scope (multiple MPS types) while Project Alive is MPS II-only.
• Action For Aidan: Hunter syndrome-focused nonprofit that matched $200K-$400K with Project Alive for MPS II research. Operates a near-identical model — family-founded, fundraising for research and clinical trial support — making it a closely comparable peer.
• MPS Superhero Foundation: Direct Hunter syndrome-specific peer and grantee of Project Alive. Shares the same disease focus, family-driven fundraising model, and patient-support mission.
• Cure SMA: Spinal muscular atrophy-focused nonprofit that successfully drove Spinraza and Zolgensma approvals. A more mature analog of Project Alive's playbook — disease-specific family-founded nonprofit funding gene therapy pipeline development.
• Hunter Syndrome Foundation: Founded in 2013 by Project Alive board member Jeanette Henriquez, this is a Hunter syndrome-specific peer raising approximately $200K for research — directly competing for the same donor base and research partnerships.
• Parent Project Muscular Dystrophy: Long-established Duchenne muscular dystrophy nonprofit known for advancing exon-skipping and gene therapy approvals. Provides a comparable template for a disease-specific nonprofit scaling from community fundraising to regulatory and clinical impact.

Others

• Denali Therapeutics: Biopharmaceutical company running an MPS II clinical trial and a participant in Project Alive's Family Fair. Functions as an industry partner rather than a competitor, but its pipeline success directly determines outcomes for the community Project Alive serves.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks7 records

Key highlights7 records

Customer concentration

• Facebookfacebook.com/projectalive
• Instagraminstagram.com/projectalive
• LinkedInlinkedin.com/company/projectalive

Compliance3 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles23 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Project Alive