ALD Alliance

What ALD Alliance does

The ALD Alliance is a volunteer-run, 501(c)(3) nonprofit charitable organization headquartered in Brooklyn, New York, founded in 2012 by Elisa and Bobby Seeger following the death of their son Aidan Jack Seeger from adrenoleukodystrophy (ALD) at age seven. The organization's mission is to drive universal newborn screening for ALD across the United States and to provide direct support services to families affected by the disease, including care packages for newborn-screened infants, financial assistance through the Aidan's Gifts program, psychological support resources, an ALD Family Registry, and educational content for clinicians and parents. Originally operating as the Aidan Jack Seeger Foundation, the organization rebranded to ALD Alliance and established the Newborn Screening Alliance as a subsidiary program to advocate for newborn screening equity more broadly. As of 2026, ALD Alliance has been the primary driver behind ALD newborn screening mandates in 48 U.S. states plus the District of Columbia, up from a single state in 2013, with New York alone having screened over 2.2 million babies and identified 157 cases since screening began on December 30, 2013.

The organization does not develop proprietary technology. Its digital infrastructure consists of standard web platforms — DVForms for donation processing, Venmo and PayPal for fundraising, a YouTube channel for educational video content in English and Spanish, and a basic website CMS for resource hosting. Its core "products" are advocacy outcomes (state-level newborn screening mandates), educational resources (parent guides, physician support materials, newborn screening education videos), direct support services (care packages, Aidan's Gifts financial assistance, psychological support), the annual ALD Standards of Care Conference, and the Aidan's Ride community event series. The revenue model is entirely donation-based: individual charitable contributions, event-based fundraising, and corporate sponsorships from pharmaceutical companies including Mirum Pharmaceuticals, Minoryx Therapeutics, bluebird bio, and Global Genes.

ALD Alliance serves a multi-stakeholder ecosystem that includes newly diagnosed ALD families (its primary beneficiary population), pediatricians and specialist clinicians, state newborn screening programs and public health labs, and federal and state policymakers. It is a member of multiple rare-disease coalitions including NORD, EveryLife Foundation, ALD Connect, Leukodystrophy Alliance, Genetic Alliance, Hunter's Hope Foundation, Remember The Girls, Global Advocacy Alliance, and Baby's First Test. The organization is staffed entirely by volunteers, with no more than 10 personnel identified, including founder Elisa Seeger and parent advocate Miranda McAuliffe.

Name

ALD Alliance

Legal name

ALD Alliance

Website

https://aldalliance.org

Company type

Private

Founded year

2012

Operating status

Operating

Headcount range

1–10 employees

Ownership category

akta.pro rank

Headquarters

HQ city

Brooklyn

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Marketing or Sales, Operations, Others

Revenue model

1. Individual donations and charitable contributions: The organization is a non-profit 501(c)(3) charity funded by donations from individuals. Donations are the primary funding source, with every contribution directly supporting the ALD newborn screening advocacy mission and family support programs.
2. Event-based fundraising (Aidan's Ride): The organization raises funds through its annual Aidan's Ride motorcycle event series and associated community fundraising activities, supplemented by corporate sponsorships from pharmaceutical companies.

Go-to-market motion2 records

Distribution channels3 records

Marketing channels7 records

Core offering

ALD Alliance is a volunteer-run non-profit 501(c)(3) advocacy organization that drives universal newborn screening for Adrenoleukodystrophy (ALD) and provides direct support services to families affected by the disease. Its offerings include the ALD Family Registry, care packages for newborns diagnosed through screening, financial assistance through Aidan's Gifts, an annual Standards of Care Conference, educational videos and parent guides in English and Spanish, psychological support resources, and legislative/physician support services.

Product overview

ALD Alliance is a non-profit 501(c)(3) organization (formerly the Aidan Jack Seeger Foundation) that operates as an advocacy and support organization rather than a technology company. The organization's offerings consist of patient/family support programs and advocacy services. The core offerings include the ALD Family Registry for connecting affected families, free care packages for newborns diagnosed through screening, Aidan's Gifts financial assistance program, the annual ALD Standards of Care Conference, newborn screening education videos in English and Spanish, the Parent Guide to ALD, psychological support resources, and legislative/physician support services. The organization also runs the Newborn Screening Alliance program to advocate for equitable newborn screening nationwide. These services work together to support ALD families from diagnosis through treatment and beyond.

Differentiator

Problem solved

Functional benefit

Brands

• Newborn Screening Alliance: A program of The ALD Alliance established to advocate for newborn screening nationally and work towards streamlining the newborn screening process creating a more equitable system nationwide.

Products and services

• ALD Family Registry
• Care Packages for Newborn Screen Families
• Aidan's Gifts
• ALD Standards of Care Conference
• Newborn Screening Education Videos
• Parent Guide to ALD
• Psychological Support Resources
• Newborn Screening Alliance
• Legislative Support Services
• Physician Support Resources

Quantifiable outcome

• More than 2.2 million babies screened for ALD in New York since December 2013, with 157 babies diagnosed and receiving life-saving monitoring and/or treatment.
• +3 more outcomes

Named customers4 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

Partnerships

15 partnerships are on record, tiered minor and core.

• Genetix BiotecminorGTM or Marketing Partner · 1 January 2026Genetix Biotec is listed as a sponsor of the 2026 ALD Standards of Care Conference.
• Global GenescoreGTM or Marketing Partner · 1 January 2021Global Genes provided sponsorship for the ALD Alliance's newborn screening education video project (2021), which includes English and Spanish versions produced by founder Elisa Seeger and Miranda McAuliffe, with videography by David Finlay of Finlay Films.
• Mirum PharmaceuticalscoreGTM or Marketing PartnerMirum Pharmaceuticals partnered with PreventionGenetics to offer a no-cost genetic testing program (ALD Newborn Screening Reflex Test Program) for children who screen positive for ALD on the first VLCFA test but test negative for the ALD gene mutation. Mirum also sponsors ALD Alliance's fall 2025 community events (Aidan's Ride and related activities).
• Minoryx TherapeuticscoreGTM or Marketing PartnerMinoryx Therapeutics is a sponsor of the 2026 ALD Standards of Care Conference and funded the Spanish translation of all ALD Alliance Spanish-language resources, including the parent guide to ALD and psychological support materials.
• bluebird biocoreGTM or Marketing Partnerbluebird bio provided support for the ALD Alliance's psychological support resource pages (addressing the mental health impact of ALD diagnosis and treatment), developed in collaboration with Dr. Rene Pierpont and Dr. Ashley Isaia of the University of Minnesota.
• PreventionGeneticscoreTechnology or IntegrationPreventionGenetics partners with Mirum Pharmaceuticals to offer the ALD Newborn Screening Reflex Test Program — no-cost genetic testing for children who screen positive for elevated VLCFAs on newborn screening but are negative for the ALD gene mutation. This helps identify other disorders such as PBD-ZSD.
• NORD (National Organization for Rare Disorders)coreStrategic or Co-development PartnerThe ALD Alliance is a member of NORD, the primary US organization advocating for the rare disease community. Membership provides access to policy advocacy infrastructure, coalition resources, and a network of rare disease organizations.
• ALD ConnectcoreStrategic or Co-development PartnerALD Alliance is a member of ALD Connect, an organization dedicated to ALD research, clinical care, and patient advocacy. The two organizations share resources, host community calls, and provide complementary financial assistance programs.
• Leukodystrophy AllianceminorStrategic or Co-development PartnerThe ALD Alliance is a member of the Leukodystrophy Alliance, an organization serving the broader leukodystrophy community.
• EveryLife FoundationminorStrategic or Co-development PartnerThe ALD Alliance is a member of the EveryLife Foundation, which advocates for rare disease policy and healthcare reform.
• Genetic AllianceminorStrategic or Co-development PartnerThe ALD Alliance is a member of Genetic Alliance, a network of rare disease organizations providing advocacy resources and coalition support.
• Hunter's Hope FoundationminorStrategic or Co-development PartnerThe ALD Alliance is affiliated with Hunter's Hope Foundation through its membership, supporting families affected by leukodystrophies.
• Remember The GirlsminorStrategic or Co-development PartnerThe ALD Alliance is affiliated with Remember The Girls, which provides support and family planning resources for X-linked female carriers of genetic conditions including ALD.
• Global Advocacy AllianceminorStrategic or Co-development PartnerThe ALD Alliance is a member of the Global Advocacy Alliance, an international coalition of patient organizations working on rare disease advocacy.
• Baby's First TestminorStrategic or Co-development PartnerThe ALD Alliance is affiliated with Baby's First Test, a newborn screening resource center providing information to families and providers about newborn screening programs across the US.

Scale indicators6 records

Recent moves7 records

Expansion highlights6 records

Broad incumbents

• Genetic Alliance: Coalition network of genetic and rare disease advocacy organizations providing shared infrastructure for policy advocacy and community engagement. ALD Alliance is a member; the organizations share coalition-based advocacy models serving genetic disease communities.
• Muscular Dystrophy Association (MDA): Large established nonprofit providing family support, advocacy, and research funding across neuromuscular diseases. Operates at much greater scale and breadth but is comparable in offering multi-disease family support services, advocacy infrastructure, and clinical-care resources for a defined rare-disease population.
• EveryLife Foundation for Rare Diseases: Federal policy advocacy nonprofit focused on rare disease legislation and regulatory reform. ALD Alliance is a member; EveryLife is comparable in federal-level newborn screening and RUSP reform advocacy work, though it operates as an umbrella rather than a single-disease organization.
• Global Genes: Broad rare disease advocacy and support nonprofit providing educational resources, coalition building, and patient programs. Sponsored ALD Alliance's 2021 newborn screening education video; operates at greater scale across many conditions.
• NORD (National Organization for Rare Disorders): Umbrella advocacy organization for the US rare disease community, providing policy advocacy, coalition infrastructure, and member services. ALD Alliance is a NORD member; NORD is comparable as an advocacy-and-support entity operating across many rare conditions rather than one.

Direct peers

• ALD Connect: ALD-specific research, clinical care, and patient advocacy organization. While more research- and clinical-trial focused, it shares the ALD patient community, sponsors joint community calls, and complements ALD Alliance's policy and family-support mission.
• Hunter's Hope Foundation: Family-founded leukodystrophy and rare disease advocacy nonprofit supporting affected families, funding research, and pushing newborn screening. Already a coalition affiliate of ALD Alliance, it is the closest direct peer in scope, model (parent-led, family support, legislative advocacy), and disease community.
• Leukodystrophy Alliance: Coalition organization serving the broader leukodystrophy community (which includes ALD). ALD Alliance is a member, and the two share a disease-category mission, family support services, and newborn screening advocacy across the leukodystrophy spectrum.

Emerging players

• Remember The Girls: Support organization for female carriers of X-linked genetic conditions including ALD. Coalition affiliate of ALD Alliance; comparable family-support and education model for a niche genetic carrier community adjacent to the same disease.
• ZSD Alliance: Patient advocacy organization for Peroxisome Biogenesis Disorder-Zellweger Spectrum Disorder, the most common disorder identified via elevated VLCFAs in ALD newborn screening. Sister organization in the same newborn screening reflex pathway, relevant as the secondary-disease ecosystem around ALD screening expands.

Market position

Strengths1 record

Weaknesses5 records

Competitive moat6 records

Key risks6 records

Key highlights3 records

Customer concentration

• YouTubeyoutube.com/@aldalliance1296
• Xx.com/Aidanslaw
• Facebookfacebook.com/ALDAlliance
• LinkedInlinkedin.com/company/about

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Subsidiaries1 record

Funding overview

Funding rounds1 record

Investors1 record

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M&A

Investments

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Frequently asked questions about ALD Alliance