Originally published in Montage Magazine 2025 Issue 3.
At Brown University, sleep clinician Katie Sharkey, MD, PhD, and patient advocate Richelle Topping are teaming up to raise sleep disorders awareness and bring first-hand lived experience to medical students and others. In this interview, the dynamic duo share how they formed this successful partnership, hoping to inspire other doctors and patients to follow their lead.
Richelle: Project Sleep’s Rising Voices trains people with sleep disorders to raise awareness through public speaking. It’s about balancing storytelling with facts. After completing the intensive five-week online training program, I started looking for speaking opportunities. Now, I give multiple talks each year, sharing my story with future doctors to help them recognize narcolepsy symptoms in their patients and better understand real-life experiences. Dr. Sharkey and I do one together for medical students at Brown University every year.
Richelle: I reached out to Dr. Sharkey to let her know I’d finished the Rising Voices program and ask if she knew of any situations where it would make sense for me to come and give my presentation. At the time, she was working on a paper with Project Sleep’s CEO Julie Flygare, so I knew she was familiar with the organization.
Dr. Sharkey: I was thrilled that Richelle had completed Rising Voices. I teach the narcolepsy lecture in the Brain Science block for the second-year medical students at Brown, so I thought the presentation was a great fit. I reached out to the faculty who run that rotation, and they were so interested that they made it a required attendance program. We started with second year medical students, and now Richelle also speaks to our psychiatry residents and the undergraduate sleep interest group on campus.
Dr. Sharkey: After I give my sleep lecture with a focus on narcolepsy, the students take a quick break and then Richelle does her presentation. The students are absolutely riveted. It’s meaningful for them to see that this is a real person with a cool job who is close to their age; they relate to her. Plus, her storytelling is compelling, thanks to Rising Voices. You know, I can talk to them about neurotransmitters and medications, but having a person talk about their lived experiences makes it hit home. They ask a lot of questions.
Richelle: What I noticed, especially following Dr. Sharkey’s lecture, is that I can see the students putting things together, making the connection between the symptoms and mechanisms they’ve learned about and the lived experiences I’m talking about. It’s fascinating to me how well thought-out their questions are. They’re asking about both the science and lived experience.
Dr. Sharkey: There aren’t many settings where the person standing in the front of the medical school lecture hall is a patient. It’s one of the reasons Richelle’s presentation is so powerful: it changes the power dynamic. She’s commanding the room, all eyes on her.
Not every clinician has training around positionality and power differentials. The students aren’t usually thinking about it on their own, so we always point out the vulnerability in Richelle disclosing her diagnosis and sharing the ups-and-downs of her treatment course in front of her doctor. We tell them, “Before Richelle and I agreed to do this together, we discussed how to make sure it would not affect our patient-doctor relationship. That takes some trust. We needed to agree that Richelle can speak to the challenges, like how a certain medicine I prescribed didn’t work that well.” It’s not perfect and they need to hear that, too.
Dr. Sharkey: There’s limited time available in the medical school curriculum, so adding something in isn’t always easy. Thankfully, our faculty was open to the idea. The first year, they bought the students pizza and tagged the presentation onto their lunch hour.
Richelle: After the first presentation, we made sure to take the feedback from the Rising Voices post-presentation survey and send it along to the faculty to show how much the students got out of it.
Dr. Sharkey: Since then, it’s been standalone. We had to prove ourselves a little bit, but Richelle’s story ties so well into the neuro block, and the people who teach it believe in patient voices. Now, Richelle’s presentation is a highlight; her reputation precedes her. Other faculty members have even contacted her for opportunities of their own.
Dr. Sharkey: A Rising Voices speaker presentation is not the same as a patient panel or an interview. It is polished and focused on one story. I don’t want to understate how professional it is. I am up there, as a professor, presenting slides, and who comes up right after me? Someone with even better-looking slides—Richelle!
Richelle: When I give talks elsewhere, there’s always a lull before anyone asks a question. Having Dr. Sharkey there to jump in, ask questions, and tie it into what they’ve learned gives the students time to think through their own, well-informed questions.
I’m grateful I had such a supportive sleep physician during my diagnosis process, so it means a lot to work together to educate a new generation of providers who will give that same level of care to their patients.
Richelle: You can connect with Lauren Oglesby, MPH, Project Sleep’s Programs Manager who runs the Rising Voices program at [email protected]. Over 170 patient advocates have completed the training all across the U.S. and in twenty countries worldwide. Even if there isn’t a speaker in your area, Lauren can help facilitate an online speaker. Plus, Rising Voices speakers represent a variety of sleep conditions, including type 1 and type 2 narcolepsy, idiopathic hypersomnia, sleep apnea, and REM sleep behavior disorder.
Originally published in Montage Magazine 2025 Issue 3.
Richelle Topping of Cranston, Rhode Island, is a freelance camera assistant and member of the International Cinematographers Guild. After eighteen years of struggling with sleepiness, she received a type 1 narcolepsy diagnosis at age 33. Richelle is a trained speaker with Project Sleep’s Rising Voices program.
Katie Sharkey, MD, PhD is a sleep medicine physician and associate professor of Medicine and of Psychiatry & Human Behavior and Associate Dean for Gender Equity at the Warren Alpert Medical School of Brown University. She is also a member of Project Sleep’s Expert Advisory Board.
Project Sleep’s Rising Voices program serves the dual purpose of fostering a new generation of patient-advocates spreading awareness of sleep disorders while empowering participants. Learn more and book a Rising Voices speaker.
