Moving Research Forward

As I arrived in Boston this morning, nerves tumbled in my stomach. I walked through a picturesque snow-swept Copley Square, past the finish line of the Boston Marathon.  I was in Boston — not to run, but to face another formidable challenge. I was here to participate in a Narcolepsy Stem Cell Research Study.

As described by the research materials:

“It has been possible to study disease in animals by using their skin cells to make stem cells.  You may have heard about these special cells that can develop into many types of body tissues in the laboratory. We believe that stem cells may one day be useful for curing diseases as well.  As an example, replacing the nerve cells that are missing in the brains of people with narcolepsy might cure this disease. 

We want to make stem cell lines (cells grown in dishes that keep growing in the laboratory) from the skin of people with narcolepsy. We will take a skin biopsy from the leg. We will then induce these cells to become stem cells. These cells can then be developed into more specialized cells, such as nerve cells. Then we can test the cells to find out why they die, and also how to keep them alive and healthy. Saving these cells might one day offer hope of a way to prevent or cure narcolepsy.”

A few months ago, when I heard about this study, I signed up immediately (you must have well-documented narcolepsy and a clear history of cataplexy). I didn’t think twice about it – of course I’d love to help move narcolepsy research forward in any way – running a marathon or contributing a small amount of skin. No big deal.

Nevertheless, as the day of the appointment approached — my nerves set in.  I may be “strong” when it comes to athletics, but medical procedures are a whole different story. I am very squeamish just thinking about blood, etc.  

Luckily, I was able to consult with a close friend in the narcolepsy community who had already participated in this study. She reassured me that it was a quick process with minimal discomfort. Entering the building for my appointment today – I had mixed feelings. Intellectually, I knew I’d be okay. Emotionally, I was a hot mess.

My nerves were quickly calmed when Dr. David White greeted me with a smile. Dr. White is conducting this study with several investigators from the Harvard Stem Cell Institute.  The procedure went very smoothly. I will have to take two days off from exercising to allow the area to heal.

Although this skin biopsy procedure was slightly outside of my natural comfort zone, I am so glad I participated. I am honored to be able to help narcolepsy research in this capacity. I look forward to hearing how this research helps improve our understanding of hypocretin cells and why they are missing in the brains of people with narcolepsy.

Note: More participants are needed.  If you are in the Boston area and interested in finding out more information and possibly participating, call 877-SLEEP-HC or email


  1. thomas.flygare on December 22, 2010 at 10:25 am

    Good for you, Julie! This looks like a promising line of research, although it will take some time to materialize. Hopefully your blog will encourage others to voulunteer.

  2. Jackie Wagner on December 22, 2010 at 10:50 am

    Congrats Julie on your participation in the stem cell research! I know it was tough for you to work through but you did it, not only for yourself but for so many others battling your same issues! Not only should you be honored but proud of yourself as well!

  3. Robert M. Burnside on December 22, 2010 at 3:39 pm

    Well Julie, although you've demonstrated this all along, you now literally have "skin in the game" combating narcolepsy. Thanks for being a light along the path for others that we can indeed battle this disease, and with good will and the strength of many, it will eventually be overcome.

  4. Paul Atreides on December 24, 2010 at 10:32 am

    Very interesting that scientists can make hypocretin stem cells from simple skin cells. Thank you for doing your part! In a related note, Stanford has a program whereby you can donate your brain in the furtherance of narcolepsy research. Considering participating is perhaps a morbid thought, but would be a very giving gesture for anyone with Narcolepsy. They also need brains from those without Narcolepsy as 'controls', so anyone can donate.

  5. Bri on January 10, 2014 at 8:40 pm

    Hi Julie,

    Do you know if it’s possible to participate in the study of you’re not able to travel to Boston?

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