CHARGE Syndrome Foundation, Inc.

What CHARGE Syndrome Foundation, Inc. does

The CHARGE Syndrome Foundation, Inc. is a 501(c)(3) tax-exempt nonprofit organization founded in 1993 and headquartered in Buffalo Grove, Illinois. Its mission is to support individuals affected by CHARGE syndrome, a rare genetic condition occurring in approximately 1 in 8,000-10,000 births and most often caused by CHD7 gene mutations, along with their families. The Foundation serves four primary constituencies: families of individuals with CHARGE syndrome, medical professionals, educators and therapists, and adults living with CHARGE syndrome. Core services include a nationwide Family Liaison network covering all 50 US states plus Puerto Rico, biennial international conferences, webinars, quarterly eNews, family assistance programs (medical travel, recreational assistance, sibling scholarships), and an awareness merchandise store.

The Foundation's product portfolio centers on informational publications rather than technology platforms. Flagship resources include a 200+ page Management Manual for Parents (also available in Spanish), an Education Professional Packet, the New Parent Folder, brochures in English and Spanish, and the official CHARGE Syndrome book distributed by core publishing partner Plural Publishing, whose royalties benefit the Foundation. The Foundation also promotes the 4to24 transition guidance app developed by the National Research and Training Center on Blindness and Low Vision (NRTC) and partnered with Sense UK on a CHARGE Information Pack for Practitioners. Its most distinctive intangible asset is the international American Sign Language sign for CHARGE syndrome, developed in 2007 by a committee of young adults with CHARGE from Australia, Canada, and the United States.

The Foundation's revenue model is donation-based and diversified across individual contributions, annual memberships, awareness merchandise sales through the online CHARGE Syndrome Awareness Store, passive affiliate commissions from iGive, Raise Right, and Goodshop, and book royalties from Plural Publishing. Fundraising is executed through multiple channels including quarterly newsletters, Facebook fundraising, biennial conferences, Walk and Roll for CHARGE events, Panda Express restaurant fundraisers, and Charge It for CHARGE campaigns. Operations are supported by a staff of 5 employees, a Board of Directors, a Professional Advisory Board, and a nationwide network of volunteer Family Liaisons.

Name

CHARGE Syndrome Foundation, Inc.

Legal name

CHARGE Syndrome Foundation, Inc.

Website

https://chargesyndrome.org

Company type

Private

Operating status

Operating

Headcount range

1–10 employees

Short description

The CHARGE Syndrome Foundation is a 501(c)(3) nonprofit that supports individuals with CHARGE syndrome, a rare genetic condition, and their families through a nationwide Family Liaison network, biennial conferences, educational publications, and family assistance programs.

Ownership category

akta.pro rank

Headquarters

HQ city

Buffalo Grove

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 and Contributions: The Foundation operates as a 501(c)(3) tax-exempt organization. Donations are tax-deductible within U.S. law guidelines. Multiple donation methods are offered including one-time, recurring, stock donations, tribute gifts, and employer matching.
2. Membership Fees: Annual membership program with benefits including newsletters, conference discounts, and access to member resources.
3. Shop/Awareness Items: Sale of CHARGE Syndrome Awareness Store merchandise including clothing, accessories, and awareness items.
4. Affiliate Shopping Programs: Partner retailers (iGive, Raise Right, Goodshop) donate a percentage of purchases when customers select the Foundation as their charity of choice.

Pricing tiers

Go-to-market motion2 records

Distribution channels4 records

Marketing channels6 records

Core offering

The CHARGE Syndrome Foundation is a 501(c)(3) nonprofit organization that provides outreach, education, and research support for individuals with CHARGE syndrome and their families. It operates a nationwide Family Liaison network across all 50 US states plus Puerto Rico, publishes educational resources including the 200+ page Management Manual for Parents and the CHARGE Syndrome Book, and runs assistance programs for medical travel, recreation, and siblings. The Foundation also hosts biennial international conferences and webinars.

Product overview

The CHARGE Syndrome Foundation offers a unified portfolio of support services and resources for individuals with CHARGE syndrome and their families. The core offerings include educational publications (Management Manual for Parents, Education Professional Packet, CHARGE Syndrome Book), the 4to24 transition guidance app, and support programs (Family Liaisons, Medical Travel Assistance, Recreational Assistance). Additional programs include biennial conferences, webinars, newsletters (CHARGE Accounts), scholarships, and an awareness merchandise store. The foundation does not operate a technology platform product but provides services directly to families and professionals.

Differentiator

Problem solved

Functional benefit

Products and services

• CHARGE Syndrome Management Manual for Parents Over 200 pages of information and forms to help parents manage the complexities of having a child with CHARGE Syndrome. Also available in Spanish.

Quantifiable outcome

• Family Liaisons in all 50 US states plus Puerto Rico
• +3 more outcomes

Named customers4 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

Feature1 record

Partnerships

Six partnerships are on record, tiered minor and core.

• iGiveminorGTM or Marketing PartneriGive is an online shopping platform where a percentage of purchases are donated to the selected charity. The CHARGE Syndrome Foundation receives affiliate donations when members shop through the platform. Over a million people have used iGive since 1997.
• Raise RightminorGTM or Marketing PartnerRaise Right is a fundraising platform that allows supporters to purchase gift cards, with a percentage benefiting the Foundation.
• GoodshopminorGTM or Marketing PartnerGoodshop is an online shopping portal that donates a percentage of purchases to the selected nonprofit when customers shop through their platform.
• Plural PublishingcoreChannel Partner/ Reseller/ DistributorPlural Publishing distributes the official CHARGE Syndrome book, edited by Timothy Hartshorne, Margaret Hefner, and Kim Blake. All royalties from book sales benefit the CHARGE Syndrome Foundation. The 2021 updated second edition includes new educational content.
• Sense UKminorStrategic or Co-development PartnerSense UK provides the CHARGE Information Pack for Practitioners, containing 28 in-depth fact sheets about living with CHARGE syndrome, designed for professionals but useful for families.
• National Research and Training Center on Blindness and Low Vision (NRTC)coreStrategic or Co-development PartnerThe NRTC created the 4to24 App for transition guidance, a free resource for parents of children with hearing and visual impairments ages 4-24. The Foundation promotes this resource to families navigating transition from youth to adulthood.

Scale indicators3 records

Recent moves6 records

Expansion highlights4 records

Broad incumbents

• National Down Syndrome Society: Large condition-specific disability advocacy organization delivering support, education, research, and policy work; comparable operating architecture at a meaningfully larger scale and budget.
• Genetic Alliance: Federation of genetic condition advocacy groups providing research, registry, and policy support; comparable to the Foundation's role as a condition-specific advocate for families affected by a CHD7-driven genetic syndrome.
• National Organization for Rare Disorders (NORD): National umbrella advocacy and research organization for all rare diseases in the US; a peer in patient support infrastructure, research funding, and member-service model for ultra-rare populations like CHARGE syndrome.

Emerging players

• National Association for Parents of Children with Visual Impairments (NAPVI) / Family Connect: Family-support organization for parents of children with visual impairments including deafblindness; overlapping audience with the deafblind (CHARGE) population the Foundation serves.

Direct peers

• 22q11.2 Society: International nonprofit supporting individuals with 22q11.2 deletion syndrome through conferences, family networks, and research; shares the small-staff, volunteer-network, syndrome-specific operating archetype.
• Prader-Willi Syndrome Association: Single-syndrome nonprofit providing family support, conferences, research funding, and professional education; directly analogous operating model, scale, and donor base profile to the CHARGE Syndrome Foundation.
• Cornelia de Lange Syndrome Foundation: Family-driven nonprofit for a specific rare genetic syndrome providing conferences, research grants, and family support; highly comparable single-syndrome operating model.
• VACTERL Association: Small rare-condition nonprofit offering peer support, information resources, and connections to medical professionals; directly comparable in mission scope, staffing scale, and resource model.
• American Association of the Deaf-Blind: National nonprofit providing community, advocacy, and information services specifically to deafblind individuals and their families; the most direct functional peer to CHARGE Syndrome Foundation for the deafblind portion of its community.
• Smith-Magenis Syndrome Foundation: Family-led nonprofit delivering advocacy, conferences, and research support for individuals with Smith-Magenis Syndrome; directly comparable in scale, donor base, and program mix.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• Facebookfacebook.com/chargesyndromefoundation
• LinkedInlinkedin.com/company/charge-syndrome-foundation-inc.

Compliance2 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles4 records

Funding overview

Funding rounds

Investors

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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 CHARGE Syndrome Foundation, Inc.