Mission:
To inspire people with epilepsy to take One More Step towards achieving a fuller life.
Philip Haydon is a neuroscientist with medically controlled post-traumatic epilepsy. Phil started Sail For Epilepsy with a mission to inspire people with epilepsy to take One More Step towards achieving a fuller life, with the necessary safety measures in place. The goals are to:
- inspire people with epilepsy
- promote awareness of epilepsy and educate the public
- raise funds to support research for a cure
Timeline of Milestones
Incorporated as 501(c)3
Tufts University School of Medicine becomes project partner
Tufts University School of Medicine is announced as a project partner. A percentage of all online and corporate donations to Sail For Epilepsy will support research into new treatments for epilepsy.
Epilepsy Foundation New England Becomes Project Partner
Epilepsy Foundation New England is announced as a project partner. A percentage of all online and corporate donations to Sail For Epilepsy will support their programs that support the 104,000 people in Maine, Massachusetts, New Hampshire, and Rhode Island affected by epilepsy and the people who care for them.
UCB Becomes First Corporate Sponsor
UCB becomes the first corporate sponsor to join Sail For Epilepsy in the mission to inspire people with epilepsy, as well as raise awareness and educate the general public about epilepsy.
Virtual Sailing Camp with EFNE
Each year, Epilepsy Foundation New England holds sailing camps where children and adults with epilepsy, along with family members, are able to get out on the water and taught to sail. Sail For Epilepsy was invited to participate during Summer 2020 in what turned out to be a Virtual Sailing Camp, due to the covid pandemic. During the camp, participants learned about the importance of signal flags used to communicate in maritime settings. Each camper then made their own flag, which was scanned and made into a real flag. Sail For Epilepsy will fly this custom flag while sailing the oceans of the world, on a mission is to inspire people with epilepsy, to raise funds to support research for a cure, and to promote awareness of epilepsy and educate the public.
Summer Sail Training
Phil competes in several short-handed sailing events in New England on the the existing sailboat, Cepheus.
One More Step Challenge Launched
The One More Step Challenge is launched, to inspire people with epilepsy, their families, and their caregivers to take One More Step towards achieving a fuller life.
Neurelis Becomes Admiralty Level Sponsor
Neurelis, Inc., based in San Diego, CA, is an innovation-driven neuroscience company providing a highly differentiated approach to target unmet medical needs in managing epilepsy. Neurelis’ first commercial product was approved on January 10, 2020. Visit www.Neurelis.com to learn more.
Neurelis is focused on therapies that empower patients, care partners, and healthcare providers. Their unique approach leverages both internal and external innovation and technology platforms to unlock opportunities for better patient care.
Virtual Shipmates Added to Boat’s Hull
We welcome 117 Virtual Shipmates aboard, by adding their names to the hull of the boat, to recognize their courage in deciding to take One More Step towards a fuller life.
Install & Test High Speed Satellite Communications System
Purchased and installed a Thales VesseLINK system that uses Iridium Certus broadband services over a network of 66 satellites that cover 100% of the globe, including deep oceans and poles. Sail For Epilepsy will use this technology to send blogs, photos, and videos while sailing between ports, as well as connect live with people with epilepsy while offshore. Tested out these capabilities during a solo roundtrip training voyage between Portsmouth RI and New York City.
Sail to Bermuda (Bermuda 1-2)
Phil Haydon sails the 635-mile solo leg of the Bermuda 1-2, from Newport, RI to Bermuda. We will live-stream the start of the race on Facebook, beginning around 10:55am EDT. During the voyage we’ll be posting photos, videos, and blogs from the voyage on our website as well as on Facebook, Instagram, Twitter, and YouTube. Use our boat tracker for boat positions updated every hour.
Sail to Newport (Bermuda 1-2)
The second leg of the Bermuda 1-2 is sailed double-handed, from Bermuda back to Newport, RI. Phil will be joined by Sail For Epilepsy advisor Joe “Coop” Cooper on board Cepheus. We’ll continue to post blogs, photos, and videos from the sailors as they complete the second stage of this race. Use the boat tracker on our website to follow their progress.
Sail For Epilepsy Leg 1: East Coast Expedition
The global Sail For Epilepsy voyage begins in August 2021 with a 5 port expedition along the east coast of the United States. The East Coast Expedition will visit Newport RI, Portland ME, Boston MA, Philadelphia PA, and Annapolis MD.
Sailing Training in the Bahamas
In November, Sail For Epilepsy will head to southern waters to continue sail training and be well positioned to sail across the Atlantic Ocean in the Spring of 2022.
Sail For Epilepsy Leg 2: Atlantic Crossing Adventure
Sail For Epilepsy will sail from Florida to Portugal starting in mid-May on a long blue-water passage, with a stop in the Azores. We look forward to connecting with members of the epilepsy community while sailing and in port stops. We’ll be posting blogs, photos and videos to this website and social media while offshore, as well as connecting to our Virtual Shipmates by live video.
Sail For Epilepsy Leg 3: Community Connections
Sail For Epilepsy will make port stops in Portugal, Spain, and Morocco during the summer and early fall. We will host events with local organizations, ranging from family-friendly afternoon nautical activities to evening awareness and education events for adults. If you have connections or would like to help host an event, please email [email protected] We are currently considering:
- Porto, Lisbon, and Portimao in Portugal
- Cadiz and Barcelona in Spain
- Rabat, Casablanca, and Agadir in Morocco
West Coast Events: Spring & Fall 2023
During 2023, Sail For Epilepsy will visit several cities along the West Coast of the United States, meeting with the epilepsy community for a variety of activities. We are tentatively planning on:
- Vancouver
- Seattle
- Portland
- San Francisco
- Los Angeles
- San Diego
Watch social media and our events section for updates as our plans are finalized!
Sail to Bermuda (Bermuda 1-2)
Phil Haydon sails the 635-mile solo leg of the Bermuda 1-2, from Newport, RI to Bermuda. We will live-stream the start of the race on Facebook. During the voyage we’ll be posting photos, videos, and blogs from the voyage on our website as well as on Facebook, Instagram, Twitter, and YouTube. Use our boat tracker for boat positions updated every hour.
Sail to Newport (Bermuda 1-2)
The second leg of the Bermuda 1-2 is sailed double-handed, from Bermuda back to Newport, RI. Phil will be joined by shipmate Jim Rudser, who sailed from the Azores to Porto in 2022. We’ll continue to post blogs, photos, and videos from the sailors as they complete the second stage of this race. Use the boat tracker on our website to follow their progress.
Recognizing 26
To highlight the prevalence of epilepsy (1 in 26 people will develop epilepsy in their lifetime) we have set a 2023 goal of sailing at least 2600 nautical miles consisting of at least 26 independent legs. Each time we sail, we will be sailing for our Virtual Shipmates.
Sailing
Sail For Epilepsy posts photos, videos, and blogs and broadcasts live while underway, but this project is about more than sailing. During in-port events, Phil and his crew engage with the local community to share his story and hear about ways others are living a fuller life, despite epilepsy. He gives presentations with the goal of educating the public about epilepsy and seizure first aid.
Our hope is that attendees will then speak more openly about epilepsy, helping us amplify our messages and raising awareness about a disorder that will affect 1 in 26 in their lifetime.
When he casts off, Phil is sailing for anyone else with epilepsy, their families, and their caregivers. He also sails for those who have been lost as a result of epilepsy, to honor their memory and to raise funds for research, so that a future generation of people with epilepsy will have better seizure control.
Virtual Shipmates
We hope that Phil’s story will inspire you to join our One More Step Challenge and embark on your own personal voyage to live a fuller life.
To recognize the courage of the One More Step Challenge participants, we add their first names to the boat so that these Virtual Shipmates can come along for our voyages. Some Virtual Shipmates receive a live video call from Phil when he’s underway.
Phil also makes videos featuring Virtual Shipmates. By sharing these inspirational stories, we raise awareness not only about epilepsy but about ways that people with epilepsy aren’t letting this disorder define them.
Ways to Give
There are many ways that you can support the epilepsy community by giving to Sail For Epilepsy. Visit our Ways to Give section to learn more about how you can support Sail For Epilepsy.
The One More Step Challenge: Are you able to take one extra step to do something you haven’t done before, with the necessary safety measures in place?
Celebrate our global community of Virtual Shipmates who joined the One More Step Challenges on a personal voyage towards living a fuller life.
The Sail For Epilepsy voyages, skippered by a person with epilepsy, offer an example of living a fuller life. View the latest updates, photos, and videos sent in from the boat.