Sail For Epilepsy

What Sail For Epilepsy does

Sail For Epilepsy is a Massachusetts-domiciled 501(c)(3) nonprofit founded in 2018 by Phil Haydon, Ph.D., an Emeritus Professor of Neuroscience at Tufts University School of Medicine who has lived with post-traumatic epilepsy since 1972. The organization's mission is to inspire people with epilepsy through a global sailing expedition aboard the vessel S/V Fearless (formerly Cepheus), equipped with North Sails 3Di RAW sails, a custom water ballast system, and a Garmin-based Boat Tracker for real-time voyage monitoring. It runs a portfolio of community programs, including the One More Step Challenge (a personal goal-setting framework), the Virtual Shipmates program (550+ participants whose names appear on the hull and who join via WhatsApp and a private Facebook group), Voices for Epilepsy (a story-driven interview series), and educational port-stop events hosted with regional Epilepsy Foundations.

The organization operates with a small core team of approximately five people and is funded entirely through donations, grants, and corporate sponsorships. Named corporate supporters include UCB (first sponsor, 2020), Neurelis (Admiralty-level multi-year sponsor since 2021), and Jazz Pharmaceuticals (since 2023). Distribution is multi-channel: a content website, organic social (Facebook, Instagram, YouTube, LinkedIn), an email newsletter, press coverage, in-person port-stop events, YouTube livestreams, and the Garmin Boat Tracker.

The business model is a non-transactional donation-and-sponsorship model. All community programs and events are free for participants. Geographic reach to date includes the US East Coast (Portland ME, Newport RI, Boston MA, Philadelphia PA, Annapolis MD, New Orleans LA), Portugal (Aveiro, Horta), and a stated global circumnavigation ambition. Strategic positioning rests on the founder's rare combination of neuroscientific authority, lived experience with epilepsy, and competitive offshore sailing credentials (2024 Newport-Bermuda Race double-handed division winner).

Name

Sail For Epilepsy

Legal name

Sail For Epilepsy

Website

https://sailforepilepsy.org

Company type

Private

Founded year

2018

Operating status

Operating

Headcount range

1–10 employees

Short description

Sail For Epilepsy is a Massachusetts-based 501(c)(3) nonprofit founded in 2018 that inspires people with epilepsy through a global sailing expedition aboard S/V Fearless, supported by the One More Step Challenge, a 550+ member Virtual Shipmates community, port-stop events, and pharmaceutical sponsorship.

Ownership category

akta.pro rank

Product category

Epilepsy Advocacy and Awareness

NAICS

Scenic and Sightseeing Transportation, Water (48721)

SIC

Water Transportation (4400)

akta.pro primary industry

Eco-Cruises & Small-Ship Nature Cruises (Expedition Cruising) (THAAAEAK)

akta.pro secondary industries

Luxury Sailing Cruises (Windjammers & Tall Ships) (THAEADAB), Water & Marine Guiding Services (Kayak, Canoe, Raft, SUP, Sailing) (THAAALAB)

Keywords

• Epilepsy awareness advocacy
• Patient empowerment programs
• Nonprofit sailing expeditions
• Epilepsy education resources
• Community health outreach

Headquarters

HQ city

Boston

HQ country

United States

HQ region

North America

Offices3 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations: Individual donations from supporters of the epilepsy awareness mission. Checks can be mailed to the Boston office address.
2. Corporate Sponsorships: Multi-level sponsorship program including Admiralty level (highest), with companies like UCB, Neurelis, and Jazz Pharmaceuticals providing financial support.
3. Event Sponsorship: Sponsorship of port stop events and community gatherings, such as the New Orleans event partially sponsored by UCB.
4. Grants: One More Step Grant program providing funding to recipients like Sophia's Project TEEN to expand epilepsy support initiatives.

Pricing tiers

Go-to-market motion3 records

Distribution channels4 records

Marketing channels9 records

Core offering

Sail For Epilepsy is a nonprofit advocacy organization that inspires people with epilepsy to live fuller lives through a global sailing expedition aboard S/V Fearless and the One More Step Challenge, in which participants set personal goals and have their names added to the boat as Virtual Shipmates. The organization delivers port stop events in partnership with regional Epilepsy Foundations, free epilepsy education resources, the Voices for Epilepsy interview series, and grant funding for community initiatives. All programs are offered free of charge to people with epilepsy, their families, and caregivers.

Product overview

Sail For Epilepsy is a nonprofit advocacy organization operating as a single mission-driven platform focused on inspiring people with epilepsy to live fuller lives. The core offering centers on a global sailing voyage aboard the vessel S/V Fearless, combined with the One More Step Challenge—a personal goal-setting program where participants' names are displayed on the boat as Virtual Shipmates. The organization provides epilepsy education resources, hosts a Voices for Epilepsy interview series featuring community stories, and facilitates live streaming of voyages. Supporting programs include a Boat Tracker (Garmin integration), grant funding for community initiatives, and educational port stop events in partnership with regional epilepsy organizations.

Differentiator

Problem solved

Functional benefit

Brands

• One More Step Challenge: A program inviting people with epilepsy to take on personal challenges to improve their quality of life, with participants becoming Virtual Shipmates added to the boat's hull
• Virtual Shipmates
• S/V Fearless
• Cepheus

Products and services

• One More Step Challenge A free personal goal-setting program for people with epilepsy in which participants commit to a personal challenge that improves their quality of life, with safety guardrails and support team consultation guidance, and become Virtual Shipmates with their names featured on the sailing vessel's hull.
• Virtual Shipmates Program A free global community program that adds participants' first names to the sailing vessel and features inspirational stories of individuals living with epilepsy, including commemorative flags flown during the voyage and engagement via WhatsApp broadcast updates and a private Facebook Group.
• Epilepsy Education Resources Free educational content covering living with epilepsy, seizure first aid, sleep health, ketogenic diet information, and general epilepsy awareness materials intended for patients, families, and caregivers.
• Voices for Epilepsy An interview series featuring athletes, healthcare professionals, advocates, and individuals living with epilepsy, sharing personal stories of overcoming challenges and raising awareness.
• One More Step Grant Program Grant funding that supports Virtual Shipmates and individuals with epilepsy in undertaking personal challenges and community initiatives that promote epilepsy awareness, including recipients such as Sophia's Project TEEN.
• S/V Fearless (Sailing Vessel) The sailing vessel (previously named Cepheus, a Quest 33S) used for the global epilepsy awareness voyage, equipped with a water ballast system, modified steering, and 3Di RAW sails from North Sails to support solo and double-handed offshore sailing.
• Boat Tracker Real-time GPS tracking integration with Garmin Connect allowing the public to follow the vessel's location and voyage progress online via Garmin Share.
• Live Streaming Events Real-time video broadcasts of sailing voyages and educational discussions streamed via YouTube to engage the global epilepsy community during offshore passages, with subscription notifications for upcoming livestreams.

Quantifiable outcome

• 550+ Virtual Shipmates participating in One More Step Challenge
• +2 more outcomes

Named customers8 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

Integration1 record

Feature3 records

Partnerships

Eight partnerships are on record, tiered regional, minor, major and core.

• Epilepsy Alliance LouisianaregionalStrategic or Co-development Partner · 1 January 2026Co-hosted community event with Sail For Epilepsy at Audubon Aquarium in New Orleans, attended by over 70 people. Partnership enables local community engagement and awareness activities.
• University of Holy CrossminorOthers · 1 January 2026Students from the University of Holy Cross volunteered their time at the New Orleans community event with Epilepsy Alliance Louisiana.
• Sail to PrevailregionalStrategic or Co-development Partner · 1 January 2021Hosted the Newport RI port stop event at their pier for the East Coast Expedition, providing venue and support for community engagement activities.
• Epilepsy Foundation MarylandregionalStrategic or Co-development Partner · 1 January 2021Hosted the Annapolis MD port stop as part of the East Coast Expedition 2021.
• Epilepsy Foundation Eastern Pennsylvania / Paul's Purple WarriorsregionalStrategic or Co-development Partner · 1 January 2021Hosted the Philadelphia port stop as part of the East Coast Expedition 2021.
• North SailsmajorTechnology or Integration · 1 November 2020Provided 3Di RAW sail wardrobe for S/V Cepheus. The sail technology has been tried and tested in sailing events worldwide, essential for offshore sailing and the planned extended voyages.
• Tufts University, School of MedicinecoreStrategic or Co-development Partner · 1 January 2019Dr. Philip Haydon is an Emeritus Professor of Neuroscience at Tufts University School of Medicine. His research at Tufts focused on neuron-glial interactions in sleep regulation and neurological disorders including epilepsy. The partnership provides scientific credibility and research connections for the organization.
• Epilepsy Foundation New EnglandcoreStrategic or Co-development Partner · 1 January 2019Established in 1983, EFNE is a 501(c)(3) nonprofit organization providing a Circle of Support for people with epilepsy. Co-hosts port stop events and East Coast Expedition activities including stops in Newport RI, Portland ME, and Boston MA.

Scale indicators5 records

Recent moves2 records

Expansion highlights5 records

Broad incumbents

• Citizens United for Research in Epilepsy (CURE): Leading private funder of epilepsy research with a similarly research-and-cure-aligned mission and pharma/biotech donor base. Comparable in mission adjacency though focused on grant-making rather than experiential advocacy.
• Epilepsy Foundation (national): Largest US epilepsy patient advocacy organization with the broadest portfolio of programs (research funding, seizure first aid training, support networks). Sail For Epilepsy operates as a complementary niche player with deeper storytelling and experiential programming rather than scale.

Direct peers

• Danny Did Foundation: Smaller epilepsy-focused nonprofit advancing awareness of Sudden Unexpected Death in Epilepsy (SUDEP) and seizure detection. Similar scale, donor base, and pharma-sponsorship dynamics; a closely comparable peer in the niche epilepsy nonprofit space.
• Sail to Prevail: Adaptive sailing nonprofit that has hosted Sail For Epilepsy port stops. Operates sailing as therapy/empowerment for people with disabilities, sharing the same nautical-advocacy hybrid model and overlapping with Sail For Epilepsy on the US East Coast.
• Oceans of Hope (MS): Danish-founded global sailing organization that circumnavigated to change perceptions of multiple sclerosis. Closest operating-model peer: small-team sailing vessel, chronic-condition awareness mission, pharma sponsorship backbone, and international port-stop community events.

Others

• Tufts University School of Medicine (Neuroscience): Institutional scientific partner providing credibility and research connectivity. Not a competitor but a closely adjacent enabler of the mission through Dr. Haydon's lab legacy and ongoing neuroscience research.

Regional players

• Challenge Athletes Foundation: Mission-aligned nonprofit using endurance sports (running, cycling) to empower people with physical challenges. Comparable 'adventure-as-advocacy' model and similar sponsorship base, with strong California/US-West concentration.

Emerging players

• SailAbility International: Adaptive sailing charity network operating sailing programs for people with disabilities across multiple geographies. Shares the 'sailing as empowerment' thesis but is program/network-based rather than expedition-based.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/channel/UCfoX0hTLPk3M0eEMnmw7Vjw
• Facebookfacebook.com/sailforepilepsy
• LinkedInlinkedin.com/company/sail-for-epilepsy
• Instagraminstagram.com/sail_for_epilepsy

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 Sail For Epilepsy