The narcolepsy community unites!
This is an exciting time for the narcolepsy community! On September 24,2013, the U.S. Food Drug & Administration (FDA) will host a workshop on narcolepsy to collect information about narcolepsy from patients about the impact of narcolepsy on daily life. The FDA has selected narcolepsy to be the focus of a meeting under the Patient-Focused Drug Development Initiative (PFDDI), to better understand patients’ perspectives on the severity of the disease and the available therapies for the condition.
The upcoming PFDDI meeting on narcolepsy presents an unprecedented opportunity for the narcolepsy community to unite and create a brighter future for those living with the disease and their loved ones.
Wake Up Narcolepsy (WUN) recognizes the importance of this FDA initiative and views it as a platform to give greater visibility to the seriousness and complexity of the disease, educate policy makers about narcolepsy, and raise awareness about the disease. We can leverage this program to address misconceptions about the disease.
In order to make the FDA initiative a success, it is imperative that the entire narcolepsy community unite and personally contribute: respond to the survey, participate in a webinar, submit comments, participate in the webcast, or attend the public meeting on September 24. Please refer to the Get Involved! page on the site or check out the FAQs for more details.
The FDA PFDDI on narcolepsy provides a pivotal opportunity for the narcolepsy community as we collaborate to break down barriers, strengthen our message, and raise our voices about narcolepsy. Wake Up Narcolepsy is committed to this initiative to bring narcolepsy out of the shadows and into the light. Please join us!
Monica Gow is the executive director of Wake Up Narcolepsy, Inc., a 501(c)(3) nonprofit organization dedicated to increasing awareness of narcolepsy, supporting research, and decreasing the time it takes from symptom onset to proper diagnosis. Monica has 10 years of experience in the insurance field and she is a certified elementary school teach. Monica and her husband, Dave, were motivated to bring better awareness and education to the narcolepsy community when their son was diagnosed with narcolepsy in 2008. Monica has been featured in media stories about narcolepsy and she has participated in the Boston marathon to raise awareness as part of the Wake Up Narcolepsy Marathon Team.