The Danny Did Foundation

What The Danny Did Foundation does

The Danny Did Foundation is a 501(c)(3) nonprofit organization founded in January 2010 by Mike and Mariann Stanton following the December 2009 SUDEP (Sudden Unexpected Death in Epilepsy) death of their son Danny. The organization is headquartered in Evanston, Illinois, and operates with a small staff (in the 11–50 range) to advance its mission of preventing seizure-related deaths, raising awareness of epilepsy and SUDEP, providing grants for seizure detection and prediction devices, supporting families and clinicians through education, and advocating for public-policy change. Its core "products" are programmatic rather than commercial: device-access grants for families, professional education, family travel-assistance subsidies, and policy advocacy, including the 2024 Danny Stanton SUDEP Act in Illinois and companion legislation mandating Medicaid and private-insurance coverage of qualifying seizure detection devices.

The foundation sustains operations through a diversified mix of individual donations, community fundraising (notably the multi-year Team Danny Did marathon program, which has cumulatively raised $1.5M+ since 2010), corporate sponsorship, and events such as the annual Hearts & Hugs Gala. It holds Gold-level Candid/GuideStar transparency recognition and is a founding member of Partners Against Mortality in Epilepsy (PAME). Programmatic reach extends across all 50 U.S. states and 18+ countries. The organization is not a technology developer; any seizure-detection or prediction technology referenced in its grant-making is produced by third-party medical-device vendors. The foundation is also a co-host of the Epilepsy Innovators Accelerator Course, positioning it as a convener in the SUDEP-innovation ecosystem in addition to its grant-maker and advocacy roles.

Name

The Danny Did Foundation

Legal name

The Danny Did Foundation

Website

https://dannydid.org

Company type

Private

Founded year

2010

Operating status

Operating

Headcount range

11–50 employees

Short description

The Danny Did Foundation is a 501(c)(3) nonprofit founded in 2010 that works to prevent deaths from seizures by funding seizure-detection device grants, advancing SUDEP awareness, supporting affected families, and advocating for policies expanding device access for epilepsy patients.

Ownership category

akta.pro rank

Product category

Epilepsy Advocacy and Patient Support

NAICS

Voluntary Health Organizations (813212), Grantmaking Foundations (813211)

SIC

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

akta.pro primary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

Keywords

• SUDEP prevention education
• Seizure detection grants
• Epilepsy awareness advocacy
• Patient device assistance
• Epilepsy nonprofit services

Headquarters

HQ city

Chicago, Illinois

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 Charitable Contributions: Tax-deductible donations from individuals, corporations, and foundations supporting the foundation's mission to prevent seizure-related deaths.
2. Merchandise Sales: Sale of branded merchandise including sweatshirts, t-shirts, bracelets, and lapel pins through the online gift shop.
3. Event Fundraising: Revenue generated from event sponsorships, gala tickets, and fundraising at events like the Hearts & Hugs Gala and Chicago Marathon.

Pricing tiers

Go-to-market motion2 records

Distribution channels3 records

Marketing channels8 records

Core offering

The Danny Did Foundation is a 501(c)(3) nonprofit that provides financial grants to help families afford FDA-cleared seizure detection and monitoring devices, advances public awareness and education about epilepsy and SUDEP (Sudden Unexpected Death in Epilepsy), and supports families through bereavement resources, travel assistance programs, and advocacy initiatives. The foundation does not manufacture or sell devices; it serves as an advocate, educator, and grant provider connecting families with third-party seizure detection technologies.

Product overview

The Danny Did Foundation is a nonprofit organization providing education, advocacy, and financial assistance programs for families affected by epilepsy and SUDEP. The foundation's core offerings include a Device Grant Program that helps families afford seizure detection and monitoring devices, along with comprehensive device selection resources. The foundation supports access to a portfolio of seizure detection technologies including nighttime monitors (Emfit, SAMi, NightWatch+), wearable devices (EpiWatch, EpiMonitor, BoundaryCare), smartphone apps (Inspyre, EpiPal, CAPTUREPROOF, Seizure Tracker), implanted technologies (VNS Therapy, NeuroPace RNS), surgical options (Visualase), and safety products (SleepSure Pillow, PATI). Additional programs include travel assistance for families attending epilepsy conferences, an accelerator course for epilepsy startups, the Hearts & Hugs annual gala, Team Danny Did athletic fundraising, and a merchandise shop. The foundation does not manufacture or sell devices but connects families with resources and provides grant funding to offset device costs.

Differentiator

Problem solved

Functional benefit

Products and services

• Device Grant Program
• Epilepsy Innovators Accelerator Course
• PAME Travel Assistance Program
• EADDW Travel Assistance
• EADDL Travel Assistance
• Hearts & Hugs Gala
• Team Danny Did
• Danny Did Gift Shop

Quantifiable outcome

• Supported families in all 50 states and 18+ countries
• +1 more outcomes

Named customers3 records

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

Nine partnerships are on record, tiered core and minor.

• Partners Against Mortality in Epilepsy (PAME)coreStrategic or Co-development Partner · 1 January 2012DDF is a founding member of PAME, a collaboration among healthcare providers, researchers, public health officials, patient advocates, caregivers, and bereaved families working to prevent epilepsy-related mortality including SUDEP. PAME holds annual conferences and educational webinars.
• American Epilepsy Society (AES)coreStrategic or Co-development PartnerPAME is housed within AES which provides pro-bono fiscal and administrative support. DDF collaborates on position statements regarding SUDEP counseling and device coverage.
• Epilepsy Foundation of AmericacoreStrategic or Co-development PartnerPartner in PAME collaboration and joint position statement on non-invasive seizure detection devices as part of comprehensive epilepsy care. Co-host of Epilepsy Innovators Accelerator Course.
• CURE: Citizens United for Research in EpilepsycoreStrategic or Co-development PartnerMajor contributing organization to PAME collaborative effort to advance understanding and prevention of SUDEP and epilepsy-related mortality.
• Child Neurology FoundationcoreStrategic or Co-development PartnerDDF co-created patient education materials on SUDEP with the Child Neurology Foundation. Partner in CHICA initiative for SUDEP screening in pediatric care.
• North American SUDEP Registry (NASR)coreStrategic or Co-development PartnerDDF worked with Illinois State Senator Dan Kotowski to pass the Danny Stanton SUDEP Act requiring coroners and medical examiners in Illinois to report SUDEP instances to NASR at NYU.
• National Association of Epilepsy CentersminorOthersDDF references NAEC as resource for patients and caregivers to find epileptologists and locate epilepsy centers.
• The Charlie FoundationminorOthersReferenced as resource for ketogenic diet information for epilepsy treatment.
• Chelsea Hutchison FoundationminorOthersReferenced as resource for seizure dog funding support.

Scale indicators4 records

Recent moves5 records

Expansion highlights5 records

Regional players

• SUDEP Action: UK-based charity dedicated to Sudden Unexpected Death in Epilepsy, directly comparable in mission focus on SUDEP awareness, bereavement support, and research advocacy, but operating primarily in the United Kingdom.
• Epilepsy Foundation of Greater Chicago: Regional Chicago-area epilepsy nonprofit where board member Kurt Florian previously served as President and Chairman. Shares DDF's geographic base and patient-services orientation but at a localized scale.

Broad incumbents

• Epilepsy Foundation of America: The largest US epilepsy advocacy and patient-services nonprofit; co-hosts the Epilepsy Innovators Accelerator Course with DDF and is a PAME partner. Both organizations serve epilepsy families and advance SUDEP awareness, but Epilepsy Foundation operates at much greater scale and across broader epilepsy topics.
• American Epilepsy Society: Professional society of clinicians and researchers that houses PAME and provides pro-bono fiscal/administrative support to the initiative. Engages with DDF on SUDEP counseling and device coverage position statements but serves a professional rather than patient-facing audience.
• SUDEP Institute: Program of the Epilepsy Foundation of America dedicated to SUDEP awareness, bereavement support, and research funding. Operates as a broader incumbent with overlapping SUDEP-focused mission but embedded within a larger organization.

Direct peers

• Child Neurology Foundation: DDF co-created patient SUDEP education materials with Child Neurology Foundation and partners in the CHICA pediatric SUDEP screening initiative. Both serve pediatric neurology families and produce clinician-facing education resources.
• Chelsea Hutchison Foundation: Referenced by DDF as a peer resource for seizure dog funding support. Both foundations provide direct financial assistance to epilepsy families for safety devices and seizure-response services.
• CURE: Citizens United for Research in Epilepsy: Major contributing organization in the PAME collaborative alongside DDF, focused on epilepsy research funding and SUDEP awareness. Shares the SUDEP-prevention mission but funds scientific research rather than device grants.
• The Charlie Foundation: Referenced by DDF as a content partner for ketogenic-diet information in epilepsy treatment. Both are parent-founded epilepsy nonprofits providing patient/family educational resources and direct support programs.

Others

• North American SUDEP Registry (NASR): Research registry at NYU that receives mandatory SUDEP case reporting enabled by the Danny Stanton SUDEP Act. Ecosystem partner rather than direct competitor; advances the same SUDEP-mortality mission through data rather than family grants.

Market position

Strengths1 record

Weaknesses1 record

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xtwitter.com/i/flow/login?redirect_after_login=%2Fdannydidorg
• YouTubeyoutube.com/c/DannyDidFoundation
• Facebookfacebook.com/DannyDid
• LinkedInlinkedin.com/company/the-danny-did-foundation
• Instagraminstagram.com/danny_did_foundation_

Compliance2 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles15 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about The Danny Did Foundation