Youth Ambassador Program

The Youth Ambassador Program is a national program designed to train promising young members of Narcolepsy Network to advocate for people with narcolepsy. Youth Ambassadors learn how to be leaders and representatives of NN all while building friendships to last a lifetime.

Each Youth Ambassador (YA) is active in their community – making presentations to their schools, holding fundraisers for NN, writing their government representatives telling them how legislative changes can affect their healthcare, just to name a few examples. For questions, please email ya@narcolepsynetwork.org.

Messages from Our Youth Ambassador Advisory Team

Click on the Youth Ambassador’s photo or name to hear why you should apply to be a Youth Ambassador.



Caroline

Lead Youth Ambassador Brandon

Youth Ambassador Conference and Events Coordinator Tori

Youth Ambassador Conference and Events Coordinator Vanessa

Youth Ambassador Outreach and Communications Coordinator

Due to the effects of COVID-19, Narcolepsy Network’s Youth Ambassador In-Person Program training day has been postponed until 2021. The new Youth Ambassador Virtual Workshop will be hosted on Saturday, October 10, 2020 at 2:00 PM EST/11:00 AM PST during the interim of the COVID-19 restrictions. Learn about the workshop here.



If you have questions about the program requirements or the application, please email Cynthia Zorn or Carol Arnette at YA@narcolepsynetwork.org.

Meet Our 2019-2020 Youth Ambassadors!

Owen is a senior at the Metropolitan Arts Institute in Phoenix, Arizona. He was diagnosed with narcolepsy in his junior year. Owen is both a visual and performing artist. He has taken several years of modern and classical dance, drawing, printmaking, and guitar. Despite his condition, Owen has kept up on his academics and is still ranked number one in his class. He also served as Vice President of his student body during his junior year. He has done academic and art tutoring for younger students, both in the community and inside his school, and today is focused on his new role as a Youth Ambassador for Narcolepsy Network. He is in the process of building a website to create a space for teens in the Southwest who suffer from narcolepsy to connect online and meet in-person to receive support. Owen has already reached out to his local state representative, Dr. Amish Shaw, met with him, received his support and assistance in promoting awareness about narcolepsy in Arizona.

John Bateh is a 21-year-old from Jacksonville, Florida. Originally his symptoms were attributed to a growth spurt at age 9. He was not diagnosed with narcolepsy with cataplexy until he was 16. He is an undergraduate at The University of Florida and plans on getting an MD/PhD after graduating. His academic interests are in neuroscience and microbiology. He plays the trumpet, loves sports, mainly football and basketball, and was inspired to be passionate about sleep disorders after reading Dr. William Dement’s, The Promise of Sleep.

Brandon Beck is a junior in high school in Northern California. Despite the challenges of living with type 2 narcolepsy and chronic daily migraines, he has developed strategies to survive and thrive by staying as active as possible at school, on the ski slopes, or on stage. He enjoys participating in his school’s debate and leadership clubs as well as immersing himself in his studies and the performing arts. While he is deeply interested in science, history, and writing, music has proven to be the best medicine – his passion for singing has led him to adventures and experiences that have been enriching and life-changing. He has had multiple featured roles in regional theatre productions and was honored to be selected as a top 40 finalist for the 2019 Songbook Academy, a national competition and summer intensive program founded by singer and pianist Michael Feinstein. He says, “It was a dream come true to sing many of the timeless standards from the Great American Songbook with some of the most talented performers in the country and learn from world-renowned performers, musicians, mentors, and coaches.” Although it may sound cliché, Brandon has found that music really does have the power to soothe and heal everyone’s heart and soul. Whether he pursues a career in medicine, business, or the performing arts, music and helping others with neurological differences and sleep disorders will always be an important part of his life.

As a Youth Ambassador, Brandon is interested in lobbying on Capitol Hill and in Sacramento to increase awareness of narcolepsy and obtain funding for education and medical research. He also wishes to advocate for students and others with narcolepsy by speaking and conducting training sessions at schools, other organizations, and with law enforcement. He wants to help remove the stigma and dispel any misconceptions associated with this sleep disorder. Brandon believes he can provide hope for others struggling with narcolepsy by sharing his journey, assisting them in overcoming some of their challenges, assuring them they are not alone, and showing them how it is possible to create new dreams.

Jennifer is a 21-year-old college student with type 1 narcolepsy. She was diagnosed with narcolepsy during her freshman year of college but did not let that get in the way of graduating a year early and pursuing a master’s degree. As a Narcolepsy Network Youth Ambassador, Jennifer hopes to reach out to other young adults and help them adapt to college and future career paths after being diagnosed with narcolepsy.

Alexander is from Boyds, Maryland and was diagnosed with type 1 narcolepsy at the age of 7. He is now 21 years old and completed his freshman year of college in West Virginia. Alexander continues to pursue his passion of working within the theatre and entertainment industry as a specialist in technical theatre and set construction. He would like to focus on improving his advocacy skills in order to help others who have narcolepsy. His experience with his local school system was incredibly challenging with school administrators due to the lack of knowledge regarding narcolepsy. He wishes to improve this situation for other students who have trouble advocating for themselves. Alexander was involved with the Narcolepsy Network many years ago as a young child and is looking forward to returning to the Network as a Youth Ambassador.

Sarah Anne is a 19-year-old student at the University of North Carolina (UNC) majoring in human development and family studies and psychology. Despite having symptoms from a young age, it took numerous doctors and misdiagnoses before finally being diagnosed with narcolepsy with cataplexy last year. “It was such a relief to finally have words for how I felt and to have an explanation for why it was so difficult to keep up with everyone else,” she explained. “In addition, it was the first step for things to get better, by making the kinds of changes I needed to in order to be successful.” She is copresident of Disability Advocates Committee at UNC and passionate about bringing awareness of invisible illnesses and promoting self-advocacy. She hopes that working with Narcolepsy Network will help raise visibility and help other people get diagnosed. In addition, she hopes her perspective on disability will be an asset in her future career as an occupational therapist.

Will is a 16-year-old from New Jersey and is currently a junior in high school. He was diagnosed with narcolepsy at the age of 14, and his life has greatly improved since beginning the recommended treatments and receiving the proper support. When he isn’t catching up on naps, Will enjoys reading, studying, playing with his dogs, and talking to friends. He really wants to improve the awareness of doctors, school nurses, and even patients about this condition and its signs because they often go unnoticed.

Jacqueline is a 17-year-old from Tampa, Florida. She was diagnosed with narcolepsy at the age of 13. Jacqueline enjoys sports, music, and drawing. Jacqueline wants to spread awareness for narcolepsy and represent invisible diseases. She also wants to advocate for the importance of sleep and its effects. Jacqueline is excited to be a Youth Ambassador and to make a difference!











Ryan is a sophomore economics major at UCLA, originally from Orange County, CA. He was diagnosed with narcolepsy with cataplexy at age 12 and has quickly learned to adapt to the symptoms since. Although narcolepsy poses a never-ending challenge each day, it has not discouraged him from attaining any one of his ambitious goals. Since Ryan’s initial diagnosis, he has been named high school basketball captain and valedictorian and scored in the top 1% at UCLA. As a Youth Ambassador, he would like to advocate for students with narcolepsy in their schools by bringing awareness to the obstacles PWNs face, and the necessary accommodations they need to thrive. Furthermore, he wants to inspire young PWNS that, they too, can flourish in any aspect of their lives, as nothing trumps undying willpower and perseverance.

Dayyan is 17 years old and is a senior in high school. He is active in academia and sports. He is looking forward to college and spreading the word about narcolepsy and cataplexy with an academic approach.













Suzanne is a junior at Emory University in Georgia. Last November, she was diagnosed with narcolepsy. Prior to her diagnosis, she never understood why she absolutely loved naps or why she would lose control of her muscles when laughing at her own jokes. As a Youth Ambassador, she hopes to raise awareness of narcolepsy and the importance of good sleep within her local community.











Everyone needs sleep to rest their brain and body for the next day. But what happens when you don’t get enough sleep every day? The effects of restless sleep are more serious than some perceive it to be. Without a good night’s rest, your brain and body suffer from not being able to recover and rejuvenate after a long day. Waking up in the morning with little rest can impact your whole day. Your mood and focus won’t be the usual as you’ll find yourself more irritated and dozed. Samantha adds, “I know this, myself, because every day when I wake up for school, I’m usually in that groggy state. I’ve gotten used to my narcolepsy and sometimes kind of enjoy it because of the sleepiness which helps my creativity. The cataplexy I’m not so fond of. I try not to laugh in school because I’m uncomfortable with the thought of losing control.”

As a junior in high school, Samantha set goals to achieve throughout the year even with her sleeping disorder. She decided to take advanced classes in math and English and she enrolled in a writer’s workshop elective. After school, she runs on the cross-country team which she’s been on each year since 9th grade. Determination reminds me of why she pushes herself to achieve goals in life. Samantha’s goals are to raise awareness of narcolepsy and of those who may even have narcolepsy, but are unaware, and to put forward the effects or PWNs deal with so others may be more accommodating.

Ava is from Dallas, Texas, and was diagnosed with narcolepsy at the age of 19 after experiencing symptoms for three very difficult years. Since starting on medication (and learning to manage its side effects), she has become significantly more outgoing and involved in college than she was in high school. Ava works as a writing tutor, mentoring freshmen, and volunteers for her university’s helpline. She hopes to attend medical school after graduating. As a Youth Ambassador, Ava wants to spread awareness of the day-to-day realities of living with narcolepsy and would like to find ways to connect the newly diagnosed with PWNs who have learned to manage their symptoms.

Mackenzie is a 20-year-old from Buford, Georgia. She is currently a junior at the University of North Georgia and plans to attend the University of Georgia next year, and later graduate school, to pursue a career in speech pathology. After going to many doctors and being told it was “all in her head”, she was finally diagnosed with narcolepsy with cataplexy at age 17. In high school, she struggled to get the academic accommodations she needed, but she’s now thriving in college and has a 4.0 GPA. Mackenzie has found many fellow PWN in her community whose friendships and support have been a huge blessing. She loves to embrace her disability and inform others, so she’s looking forward to learning how to better educate people and advocate for narcolepsy through the Youth Ambassador program!