Narcolepsy Voices of Canada
Founded because of Lucas. Built for everyone.
Narcolepsy Voices of Canada supports individuals and families through practical resources, advocacy, lived experience, and genuine connection.
Whether you are newly diagnosed, supporting someone you love, or looking to understand more — you are welcome here.
A gentle place to begin
If you are here because you or someone you love has just been diagnosed with narcolepsy, we remember how overwhelming those first days can feel. The questions, uncertainty, and search for support can be exhausting. This community was created to help you find practical guidance, trusted links, lived experience, and people who understand.
Begin HereHow can we help?
Clear pathways make an overwhelming journey feel more manageable. Choose a topic below to find practical information, family-centred guidance, and opportunities to connect.
First steps, questions to consider, and reassurance for the days ahead.
Explore →Sleep studies, specialist appointments, school success, everyday living, advocacy tools, and family-centred guidance.
Explore →Support for parents, caregivers, partners, siblings, and extended family.
Explore →Canadian travel cards, attraction access, and planning supports.
Explore →Stories, conferences, events, and spaces where people feel understood.
Connect →Awareness, speaking, research participation, and ways to make a difference.
Learn more →
The heart behind the mission
Lucas is an adventurous, compassionate, and determined young Canadian living with Narcolepsy Type 1 with cataplexy. His journey inspired Narcolepsy Voices of Canada — but this community is being built for every child, adult, family, and loved one affected by narcolepsy.
He is a student leader, proud Inuk, community volunteer, sports fan, advocate, and a young person who wants others to know they are never alone.
Follow Lucas's JourneyMaking a difference
Every conversation helps replace stigma and isolation with awareness, belonging, and hope.
Featured Podcast
Lucas and Kathy shared their family's experience on Narcolepsy Navigators UK — the podcast's first mother-and-son episode — discussing childhood narcolepsy, school advocacy, stigma, and hope.
Listen to Season 3, Episode 12 →
Finding Our Community
Lucas met other young people living with narcolepsy, while our family connected with parents who understood the journey without explanation.
Representation Matters
Seeing others live boldly with narcolepsy helped Lucas feel validated, accepted, and hopeful about what his own future can hold.
What we believe
Together, we can build greater awareness, stronger communities, and brighter futures for Canadians living with narcolepsy.
You belong here
Who We Are
Narcolepsy Voices of Canada is a grassroots support, resource, and advocacy initiative founded by Kathy and Lucas Wilcox. Built from lived experience with paediatric narcolepsy, our goal is to help Canadians feel less alone, better understood, and more connected.
Narcolepsy Voices of Canada is a grassroots, family-led initiative founded through lived experience. Our mission is to raise awareness of narcolepsy across Canada by sharing real stories, trusted resources, practical guidance, and advocacy that help individuals, families, educators, healthcare professionals, and communities better understand life with narcolepsy.
To become Canada’s leading family-centred resource for narcolepsy awareness, education, advocacy, and support, ensuring that every child, adult, and family affected by narcolepsy feels informed, understood, connected, and empowered.
Our Story
Narcolepsy Voices of Canada began with a mother and son who saw firsthand how isolating, misunderstood, and difficult navigating narcolepsy can be — especially for children and families in Canada.
For more than 20 years, Kathy worked in social services and case management, supporting individuals and families, navigating complex systems, advocating for access to services, and helping people find their voices during some of the most challenging times in their lives.
But when her son Lucas was diagnosed with Narcolepsy Type 1 with cataplexy at just eight years old, advocacy became deeply personal.
Before Lucas received his diagnosis, there were warning signs. Changes in his sleep, behaviour, energy, and daily functioning raised questions that eventually led his family to seek answers. The diagnosis brought relief in finally understanding what was happening, but it also opened the door to a new reality: learning to navigate a rare and widely misunderstood neurological condition.
As Lucas grew older, so did his desire to help others understand narcolepsy. At 12 years old, Lucas gave a presentation about narcolepsy to his local Lions Club, where he shared his lived experience, answered questions, and helped start conversations that may never have happened otherwise.
Awareness begins when someone is willing to start the conversation. Change begins when people are willing to listen.
Together, Kathy and Lucas created Narcolepsy Voices of Canada to bring Canadians affected by narcolepsy together, share lived experiences, provide reliable resources, encourage children and adults to use their voices, educate the public, and advocate for greater understanding and meaningful change.
What Narcolepsy Really Looks Like
Narcolepsy can show up in ordinary moments: car rides, meals, school days, community events, sports, family time, and everyday life. It can affect alertness, energy, concentration, emotions, and participation — but it does not erase a person’s strengths, interests, or potential.
Meet Lucas
Lucas is a young Canadian living with Narcolepsy Type 1 with cataplexy. He is an Air Cadet, community volunteer, student leader, athlete, advocate, and young person learning how his lived experience can help others feel less alone.
Leadership does not begin when someone gives you a microphone. It begins when you show up.
Support & Resources
Support, school awareness, accommodations, advocacy tools, and encouragement for young people living with narcolepsy.
Space for adults to share experiences, find resources, and feel seen in work, family life, relationships, and daily living.
Practical support and understanding for parents and caregivers navigating diagnosis, treatment, school, and advocacy.
Helping schools, workplaces, community groups, and the general public better understand narcolepsy and cataplexy.
Canadian Supports
Living with narcolepsy can affect school, travel, recreation, family life, independence, and daily participation. Excessive daytime sleepiness, cataplexy, microsleeps, disrupted nighttime sleep, brain fog, memory difficulties, and the need for restorative naps can create real barriers. These resources may help Canadian individuals and families explore supports that could be available.
Across Canada
Some people living with narcolepsy may require a support person when travelling because of disability-related needs such as excessive daytime sleepiness, cataplexy, medication schedules, cognitive difficulties, or safety concerns.
The Disability Travel Card, administered by Easter Seals Canada, is available to eligible people of all ages with a permanent disability who require a support person when travelling. Participating transportation partners may provide reduced or complimentary fares for the support person according to their individual policies. The cardholder pays the regular fare.
The Access 2 Card, also administered by Easter Seals Canada, helps people with disabilities participate in recreation, entertainment, and cultural activities. At participating venues across Canada, the person with a disability pays regular admission while their support person may receive free or discounted admission.
Always confirm eligibility, routes, booking requirements, and participating locations directly with the transportation provider or venue before travelling or visiting.
Education
Students living with narcolepsy may experience fluctuating alertness, microsleeps, cataplexy, brain fog, memory difficulties, and sudden sleep episodes. These symptoms can affect attendance, learning, testing, participation, and the ability to complete schoolwork.
Students with disabilities have a right to equal access to education and disability-related accommodation under applicable provincial or territorial human rights legislation. Supports are based on the student's individual needs and the requirements in their province, territory, school board, or educational institution.
Possible accommodations may include scheduled or as-needed restorative naps, a safe and quiet place to nap, flexible scheduling, additional time for tests and assignments, testing during periods of greatest alertness, access to teacher notes or recorded lessons, assistive technology, flexible deadlines, modified workload when appropriate, and a plan for missed instruction caused by disability-related symptoms, medical appointments, or necessary naps.
For K–12 students, supports may be documented through an Individual Education Plan (IEP) or another formal accommodation process used by the student's province, territory, or school board. College and university students should contact their institution's Accessibility Services office.
Federal Support
Some Canadians living with narcolepsy may qualify for the federal Disability Tax Credit (DTC). A diagnosis of narcolepsy does not automatically qualify someone. Eligibility is based on how the impairment affects daily life and whether the person meets the Canada Revenue Agency's criteria.
The CRA considers whether an impairment is severe and prolonged and whether the person is markedly restricted in one or more eligible categories, significantly restricted in two or more categories where the combined effect is equivalent to a marked restriction, or requires qualifying life-sustaining therapy.
For some people with narcolepsy, the category of mental functions necessary for everyday life may be relevant, including attention, concentration, memory, judgement, goal-setting, problem-solving, and regulating behaviour and emotions. A medical practitioner must certify the effects of the impairment, and the CRA makes the final eligibility decision.
When a child under age 18 is approved for the DTC, the family may also be eligible for the Child Disability Benefit (CDB), a tax-free monthly payment for eligible families. The amount depends on adjusted family net income and other eligibility criteria.
Canada's provinces and territories have different education systems, disability programs, funding opportunities, healthcare services, and processes for requesting accommodations and supports.
The availability of a program, benefit, accommodation, or funding option in one province or territory does not necessarily mean that the same support is available elsewhere in Canada.
Narcolepsy Voices of Canada encourages individuals and families to contact their provincial or territorial government, school board, educational institution, healthcare provider, or the organization responsible for administering a program to confirm current eligibility requirements and available supports.
The information provided on this website is for general informational and educational purposes and should not be considered legal, medical, financial, or tax advice. Programs, policies, and eligibility requirements may change over time.
Provincial & Territorial Resources
In Ontario, students with disabilities may be protected under the Ontario Human Rights Code, and schools have a duty to accommodate disability-related needs to the point of undue hardship. Accessibility requirements may also arise under the Accessibility for Ontarians with Disabilities Act (AODA).
Ontario students living with narcolepsy may require an Individual Education Plan (IEP) that documents accommodations such as restorative naps, access to a safe place to sleep, flexible testing, additional time, assistive technology, access to notes, and support for missed instruction.
Some Ontario students may also be eligible for assistive technology or specialized equipment through the Special Equipment Amount (SEA) process. Depending on the student's individual needs and supporting documentation, technology such as a Chromebook, laptop, tablet, or specialized software may help with note-taking, organization, text-to-speech, speech-to-text, access to digital learning materials, and memory or attention challenges related to narcolepsy.
Additional provincial and territorial resources will be added as they are identified and verified.
Music & Voices
Music has become another way for Narcolepsy Voices of Canada to share stories, create understanding, and honour the children, families, and parents whose experiences deserve to be heard.
Song
Invisible Heroes was inspired by Lucas and the incredible young people we met at a narcolepsy Campference in the United States — an experience that brought children and families together in a way we had never experienced in Canada.
Every child living with narcolepsy has their own story, strengths, dreams, and challenges. They are not defined by their diagnosis.
Many of the struggles they face are invisible to the people around them. The exhaustion, cataplexy, disrupted nighttime sleep, brain fog, and the effort it can take simply to keep up with everyday life often go unseen.
Yet these young people continue to show up. They learn, participate, build friendships, pursue their interests, and work every day to become the best versions of themselves they can be.
They inspire us with their strength, determination, and resilience. They are the Invisible Heroes.
Song
Narcolepsy Mamas was inspired by the friendships and connections that can happen when mothers raising children with narcolepsy finally meet someone who understands.
There is something incredibly comforting about hearing another parent say, “I understand.”
Someone who understands the frustration of watching your child struggle to be heard. Someone who understands the exhaustion of advocating, searching for answers, navigating systems, and trying to make sure your child receives the support they need.
Meeting other narcolepsy moms gave me something I didn’t realize I was missing: connection with people who understood this journey without needing it explained.
Those friendships have remained strong over the years, despite the distance between us. Through Narcolepsy Voices of Canada, we look forward to building more of these connections and helping children, adults, parents, caregivers, and families across Canada find one another.
Because sometimes hope begins with simply knowing that someone else understands.
Stories
We hope to create a safe space for Canadians affected by narcolepsy to share stories of diagnosis, challenges, resilience, advocacy, and hope.
Advocacy & Speaking
Lucas is beginning his journey as a youth advocate, sharing what it is like to live with paediatric narcolepsy and helping others understand the reality behind the diagnosis.
Lucas hopes to continue speaking with schools, community organizations, service clubs, conferences, healthcare audiences, and other groups across Canada.
Photos from future speaking engagements and awareness events will be added as Lucas continues his advocacy journey.
Chat & Connect
A live chat component can be added here using Tawk.to, Crisp, Jotform, or another chat service. Until then, visitors can reach out by email or through the inquiry form.
Contact
Email: narcolepsyvoicesofcanada@gmail.com
We welcome families, educators, community groups, and others who want to learn, connect, or help raise awareness.