Narcolepsy Nerd Alert: Becoming a Narcolepsy Advocate

What does being a narcolepsy advocate mean to you? In this Narcolepsy Nerd Alert live event we discuss advocacy in different contexts with our panelists and audience members, and share tips for advocating with policy makers.

Use the buttons below to jump to the different formats of this conversation.

Where to Start?

Many community members have expressed that they want to become narcolepsy advocates, but don’t know where to start. The biggest message we aim to impart: you are already a narcolepsy advocate.

If you have ever had to talk about narcolepsy to a friend, a family member, a doctor, or supervisor, or if you’ve ever dealt with an insurance challenge or healthcare access issue, you are already an advocate.

Advocacy means self-empowerment and finding my voice.”

-Margaret

Why Advocate?

There are a number of major challenges facing the narcolepsy community:

• Public awareness of narcolepsy is limited and often inaccurate.
• There is an 8 – 15 year average delay between narcolepsy symptom onset and diagnosis.
• People with narcolepsy face stigma and report feeling isolated.
• Narcolepsy research is limited, and more research is urgently needed to better understand and treat narcolepsy.

Forms of Advocacy

Narcolepsy advocacy happens in many different areas which often overlap. Your story matters and there is no one right or specific path when it comes to sharing it.

Self-Advocacy

Here are a few key phrases that can be useful when advocating in your own life (or in your loved one’s life if you are a supporter of a person with narcolepsy):

• “Is there someone else I can speak with?”
• “How should I proceed to resolve this issue?”
• “Can I ask a favor?”
• “I love it when friends do/read/ask…..”
• “Thank you for thinking of me but I can’t this time.”
• “What do you know about narcolepsy?” or “Are you familiar with narcolepsy?”
• “What questions do you have about narcolepsy and how it impacts me?”

Asking what someone knows about narcolepsy is awesome because it really draws the person in and brings them into the conversation.”

– Katie

Raising Your Voice Publicly

There are a number of factors which might motivate your decision to speak publicly about narcolepsy:

• Disclosure
• Social media
• Finding community, organizations, trainings, and awareness days
• You never know who you might reach
• Relationship-building
• Leveraging other interests and skills

For me, being a narcolepsy advocate means sharing my story in order to help others gain more awareness of narcolepsy as an actual disorder and not just a punchline. It took me 38 years to receive a proper diagnosis and access to treatment. Hopefully, sharing my own journey will help people not have to wait so long to get help.”

– Elizabeth

Legislative Advocacy

Legislative advocacy is another great way to advance progress, and is especially powerful when conducted consistently and with expert guidance. Here are Project Sleep’s legislative advocacy guiding principles:

• Advancing Sleep Research
• Accelerating Treatment Options
• Ensuring Access to Healthcare
• Furthering Education, Awareness, and Training
• Addressing Social Justice and Sleep Health Disparities

There are legislative advocacy opportunities throughout the year, but one key time of year when your advocacy is especially impactful is between mid-February to mid-April during the “appropriations process”, when Congress creates the budget for the federal government, including institutes and agencies relevant to our priorities like the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC), United States Food and Drug Administration (FDA), Department of Defense (DoD), etc.

Often the legislative progress is slow and steady, but recently we’ve had some major tangible successes, thanks to your advocacy. See our latest advocacy updates.

Our only opposition is lack of awareness.”

– Dane Christiansen, Washington D.C. Representative For Project Sleep

Becoming a Narcolepsy Advocate Resources

Resources are important. Here are some of our favorites. We look forward to hearing what our fellow #NarcolepsyNerds find most useful in furthering advocacy!

Becoming a Narcolepsy Advocate: Listen or Watch!

This conversation was originally recorded on Wednesday, February 24, 2021.