Surge to Save Newborns Coalition

What Surge to Save Newborns Coalition does

Surge to Save Newborns Coalition is a U.S.-based non-profit advocacy organization founded on March 5, 2026 to eliminate state-by-state variability in newborn screening. The coalition argues that 98% of U.S. states do not screen for all 40 expert-recommended conditions on the Recommended Uniform Screening Panel (RUSP), and that it can take up to 10 years for newly approved conditions to reach all 50 states, leading to preventable death and disability in roughly 14,000 babies identified annually with serious but treatable conditions. Its central policy ask is a one-time federal funding surge of $173 million, allocated over five years, to enable every state to screen for every RUSP-approved condition (with capacity for two additional future conditions), modeled on the Special Diabetes Program precedent. The cost-benefit framing cites an average of over $1 million in averted family costs per detected case.

The coalition is governed by two Founding Partners — Elisa Seeger (Founder of ALD Alliance) and Anna Grantham (Director of Newborn Screening and the Leukodystrophy Care Network at Hunter's Hope Foundation) — and comprises 21 named rare disease patient advocacy organizations covering conditions such as ALD, MLD, Duchenne muscular dystrophy, Krabbe disease, HCU, MPS, CTX, GAMT deficiency, and peroxisomal disorders. Travere Therapeutics is the only disclosed biopharmaceutical industry partner providing financial and strategic support. The coalition's go-to-market motion is community-led and event-driven: direct advocacy to Congress and the Federal Administration, coalition-building among rare disease organizations, media relations, and public education via a website (surgetosave.org), an interactive state-by-state screening map, downloadable Issue Brief and Manatt Health Study Report, an email newsletter, and Facebook/Instagram channels.

The organization has no commercial revenue model, no products or services to price, and no disclosed headcount. Revenue comes from donations from individuals, member organizations, and Travere Therapeutics. The coalition's underlying "technology" is the existing public-health newborn screening infrastructure (heel-prick test, RUSP framework), not a proprietary platform; its digital products are advocacy and data-visualization tools rather than commercial technology offerings.

Name

Surge to Save Newborns Coalition

Legal name

Surge to Save Newborns

Website

https://surgetosave.org

Company type

Private

Founded year

2026

Operating status

Operating

Short description

Surge to Save Newborns Coalition is a U.S. non-profit advocacy coalition founded in March 2026, uniting 21 rare disease organizations and Travere Therapeutics to lobby Congress for a one-time $173 million federal funding surge to ensure all 50 states screen newborns for every expert-recommended condition.

Ownership category

akta.pro rank

Product category

Health Advocacy | Newborn Screening Advocacy

NAICS

Social Advocacy Organizations (8133), Voluntary Health Organizations (813212), Child and Youth Services (624110), Individual and Family Services (6241)

SIC

Services-Social Services (8300), Services-Membership Organizations (8600)

akta.pro primary industry

Maternal, Child & Family Health Organizations (BPAGACAF)

akta.pro secondary industries

Maternal, Child & Family Health Program Funding (HLAJALAG), Maternal, Newborn, Child & Adolescent Health (MNCAH) Partnerships (HLAJAOAG), Maternal, Newborn, Child & Adolescent Health (MNCAH) NGOs (HLAJAKAG)

Keywords

• Newborn screening advocacy
• Rare disease policy
• Federal funding campaigns
• Health coalition advocacy
• Patient advocacy organizations

Headquarters

HQ city

S Central Washington Co

HQ country

United States

HQ region

North America

Markets served

GTM type

B2B

Offering type

Services

Cost components

Personnel, Marketing or Sales, Operations, Others

Revenue model

1. Fundraising and Donations: The coalition raises funds from individual donors, industry partners, and member organizations to support advocacy operations, public education, and coalition-building activities aimed at achieving federal newborn screening funding.

Go-to-market motion2 records

Distribution channels1 record

Marketing channels6 records

Core offering

Surge to Save Newborns Coalition is a non-profit advocacy coalition that campaigns for a one-time federal funding surge of $173 million over five years to ensure all 50 U.S. states and territories screen newborns for every condition on the Recommended Uniform Screening Panel (RUSP). The coalition unites 15+ rare disease patient advocacy organizations and industry partners to eliminate state-by-state variability in newborn screening, providing educational resources, policy advocacy, and a data-driven Manatt Health study as the foundation for its policy ask.

Product overview

Surge to Save Newborns is a coalition of rare disease patient advocacy organizations and industry partners advocating for federal funding to implement expert-approved newborn screenings across all 50 states. The coalition offers educational resources including an interactive State Map tool, downloadable Issue Brief and Study Report documents, and press releases. The organization's core mission is to eliminate state-by-state variability in newborn screening through a one-time $173 million federal funding surge, supported by 21 member organizations including ALD Alliance, MLD Foundation, Hunter's Hope Foundation, and others.

Differentiator

Problem solved

Functional benefit

Products and services

• Surge to Save Newborns Coalition Launch Official announcement and launch of the Surge to Save Newborns coalition, highlighting the Manatt Health study and the $173 million funding ask to end state-by-state variability in newborn screening. For policymakers, media, and the general public.
• State Map Tool Interactive state-level map showing newborn screening status across all 50 states, displaying which RUSP-approved conditions each state screens for and estimated funding needed per state to implement all recommended conditions. For policymakers, advocates, and the public.
• Issue Brief Strategic roadmap document providing guidance for supporting the one-time federal funding surge to ensure every state screens for every approved newborn screening condition. For policymakers, advocates, and coalition supporters.
• Study Report State-by-state data and cost assumptions from the Manatt Health study driving the funding surge request, including breakdown of costs per state and methodology. For policymakers, researchers, and the public.
• Newborn Screening Conditions Information Educational resource detailing the 8 RUSP-approved conditions not yet screened in every state, including DMD, MLD, IKD, GAMT Deficiency, MPS II, MPS I, X-ALD, and Pompe Disease, with information on treatment options and state screening status. For families, advocates, and policymakers.

Quantifiable outcome

• 14,000 babies identified with serious but treatable conditions annually through newborn screening
• +3 more outcomes

Segments3 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

21 partnerships are on record, tiered core and coalition member.

• ALD AlliancecoreStrategic or Co-development Partner · 1 March 2026Rare disease patient advocacy organization and founding member of the coalition, founded by Elisa Seeger following her son Aidan's death from unscreened ALD. Advocates for newborn screening for adrenoleukodystrophy.
• Hunter's Hope FoundationcoreStrategic or Co-development Partner · 1 March 2026Rare disease patient advocacy organization and founding member of the coalition. Anna Grantham serves as Founding Partner of the coalition and Director of Newborn Screening and the Leukodystrophy Care Network at Hunter's Hope.
• Parent Project Muscular Dystrophycoalition memberStrategic or Co-development Partner · 1 March 2026Coalition member organization advocating for newborn screening for Duchenne muscular dystrophy (DMD), which is not yet screened for in 47 states.
• MLD Foundationcoalition memberStrategic or Co-development Partner · 1 March 2026Coalition member organization advocating for newborn screening for metachromatic leukodystrophy (MLD), which is not yet screened for in 48 states.
• United Leukodystrophy Foundationcoalition memberStrategic or Co-development Partner · 1 March 2026Coalition member organization advocating for universal newborn screening across RUSP conditions.
• ALD Connectcoalition memberStrategic or Co-development Partner · 1 March 2026Coalition member organization focused on adrenoleukodystrophy (ALD) advocacy and education.
• Aicardi-Goutieres Syndrome Advocacy Associationcoalition memberStrategic or Co-development Partner · 1 March 2026Coalition member organization advocating for rare disease newborn screening.
• Association for Creatine Deficienciescoalition memberStrategic or Co-development Partner · 1 March 2026Coalition member organization advocating for newborn screening for guanidinoacetate methyltransferase (GAMT) deficiency.
• Believing for Bryleigh Foundationcoalition memberStrategic or Co-development Partner · 1 March 2026Coalition member organization advocating for newborn screening, inspired by Bryleigh who died from unscreened MLD.
• Conner's Crusadecoalition memberStrategic or Co-development Partner · 1 March 2026Coalition member organization advocating for newborn screening for ALD, inspired by Conner whose screening saved his life.
• CTX Alliancecoalition memberStrategic or Co-development Partner · 1 March 2026Coalition member organization advocating for newborn screening for cerebrotendinous xanthomatosis (CTX).
• Cure ALDcoalition memberStrategic or Co-development Partner · 1 March 2026Coalition member organization focused on curing and screening for adrenoleukodystrophy.
• HCU Network Americacoalition memberStrategic or Co-development Partner · 1 March 2026Coalition member organization advocating for newborn screening for homocystinuria (HCU).
• Judson's Legacycoalition memberStrategic or Co-development Partner · 1 March 2026Coalition member organization inspired by Judson, advocating for rare disease newborn screening.
• Katelynn's Butterfly Kissescoalition memberStrategic or Co-development Partner · 1 March 2026Coalition member organization advocating for rare disease awareness and newborn screening.
• KrabbeConnectcoalition memberStrategic or Co-development Partner · 1 March 2026Coalition member organization advocating for newborn screening for infantile Krabbe disease, which is not yet screened for in 31 states.
• Little Hercules Foundationcoalition memberStrategic or Co-development Partner · 1 March 2026Coalition member organization advocating for rare disease awareness and newborn screening.
• Project Alivecoalition memberStrategic or Co-development Partner · 1 March 2026Coalition member organization advocating for newborn screening for ALD.
• Remember The Girlscoalition memberStrategic or Co-development Partner · 1 March 2026Coalition member organization advocating for rare disease awareness and newborn screening.
• The Global Foundation for Peroxisomal Disorderscoalition memberStrategic or Co-development Partner · 1 March 2026Coalition member organization advocating for newborn screening for peroxisomal disorders.
• United MSD Foundation for Peroxisomal Disorderscoalition memberStrategic or Co-development Partner · 1 March 2026Coalition member organization advocating for peroxisomal disorder screening.

Scale indicators7 records

Recent moves6 records

Expansion highlights4 records

Direct peers

• National Organization for Rare Disorders (NORD): Largest U.S. umbrella advocacy organization for rare disease patients, with an active federal policy program that routinely comments on newborn screening, RUSP, and state implementation. Direct peer because it operates the same multi-stakeholder, federal advocacy model and represents a significant subset of Surge's member organizations' parent constituency.
• Genetic Alliance: U.S. nonprofit coalition of hundreds of genetic-condition advocacy groups that has historically worked on newborn screening, genetic services policy, and federal funding. Direct peer because it operates the same multi-disease coalition advocacy model and frequently partners with the same disease-specific organizations that form Surge's membership.
• March of Dimes: Long-standing U.S. nonprofit advocating for maternal and infant health, with an active federal policy arm that has historically championed newborn screening expansion. Direct peer because of overlapping mission scope (maternal/newborn health), federal lobbying focus, and target audience (Congress, state health departments).
• American College of Medical Genetics and Genomics (ACMG): Professional society that operates the RUSP review process referenced throughout Surge's materials. Direct peer because ACMG is the technical authority defining the very panel of conditions Surge advocates for and has been a longstanding advocate for federal newborn screening funding and infrastructure.
• Association of Public Health Laboratories (APHL): Membership organization of state and local public health laboratories that actually run newborn screening programs and have long advocated for federal implementation funding. Direct peer because it shares the same constituency (state health departments), policy ask (federal NBS funding), and coalition-advocacy model.
• EveryLife Foundation for Rare Diseases: U.S.-based rare disease advocacy organization that builds coalitions across patient groups to advance federal policy and newborn screening legislation. Direct peer because it pursues the same Washington-based, multi-organization advocacy model targeting Congress and federal agencies on rare-disease and screening policy.

Broad incumbents

• Muscular Dystrophy Association (MDA): Established U.S. rare-disease advocacy and research organization covering DMD and other neuromuscular conditions that intersect with Surge's newborn screening agenda. Broad incumbent because it operates across research, care, and policy rather than as a screening-specific coalition, but is a credible comparator for advocacy scale and federal lobbying capacity.
• American Academy of Pediatrics (AAP): Large professional society of pediatricians with an active federal affairs office that regularly comments on newborn screening, RUSP, and related federal funding. Broad incumbent because it is a much larger organization covering all of pediatrics, but is a key policy influencer on the same newborn screening policy area.

Emerging players

• Parent Project Muscular Dystrophy (PPMD): Disease-specific advocacy organization that is itself a coalition member of Surge to Save Newborns but also runs an independent federal advocacy program on DMD newborn screening. Emerging player because it operates a parallel advocacy track on the same issue, making it both a constituent and a comparable advocacy organization.
• Cure SMA (Spinal Muscular Atrophy): Disease-specific rare disease advocacy organization that recently won a successful federal push to add SMA to the RUSP and many state newborn screening panels. Emerging player because it has successfully executed the condition-by-condition newborn screening advocacy playbook that Surge is now attempting to scale across multiple diseases at once.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• Facebookfacebook.com/profile.php
• Instagraminstagram.com/surgetosave

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 Surge to Save Newborns Coalition