FDA Narcolepsy Patient Meeting
New and Upcoming Treatments for Narcolepsy 2019! Part II Update from World Sleep
Did you know the FDA has approved 27 novel drugs so far in 2019, and two of those are for narcolepsy?! How amazing is that?! The diversification of treatment approaches and new therapies under development and gaining FDA-approval for narcolepsy in the U.S. is SO EXCITING! In this post, I will provide an update on the narcolepsy…
Read MoreWords Matter: At The Crossroads Of Innovation And Dignity
Life Science Leader magazine recently published one of my most honest opinion pieces, “Words Matter: At The Crossroads Of Innovation And Dignity.” In this article, I highlight a tension between patient-centered language (that prioritizes neutral language to respect variation and individual autonomy) versus drug development language (that may lean toward hyperbole or negativity to help establish urgent unmet needs). …
Read MoreSpeaking at Patients as Partners Conference
On Monday, March 16, 2015, I was honored to speak at Patients as Partners, a conference dedicated to finding solutions on how to truly partner with patients in clinical trials. Representatives from pharma, PCORI, CTTI, FasterCures, FDA, patient advocates and patients all came together in Philadelphia for this important discussion. Many role-models and friends were in…
Read MoreWatch Now: How a Patient Helped Define A New Clinical Endpoint with FDA
How did I catch the “Advocacy Bug”? Why is the patient voice important? Watch my TED-style talk on the power of narcolepsy advocates working directly with FDA to build a brighter future. I gave this speech to over 300 clinical trial development experts in the pharmaceutical industry at the Disruptive Innovations Conference in Boston, MA on Sept.…
Read MoreWatch: Disruptive Innovations Interview on Narcolepsy, FDA & Project Sleep
I’m thrilled to share my Disruptive Innovations interview with the Conference Forum’s Exec. Director, Valerie Bowling. This fun discussion on narcolepsy, FDA and Project Sleep was filmed before my speech at the TCF’s Disruptive Innovations Conference in Boston, MA on Sept. 11, 2014. Thank you so much to Valerie and the Conference Forum’s team for…
Read MorePreparing TED-style Talk for “Radical Thinkers”
On Sept. 11, 2014, I will present a TED-style talk at “Disruptive Innovations” in Boston, MA. My 12-minute speech will discuss: “How a Patient Helped Define a New Clinical Endpoint in Narcolepsy: Diagnosed with narcolepsy with cataplexy in 2007, award-winning author and founder of Project Sleep, Julie Flygare, shares her story on how she helped define a…
Read MoreNarcolepsy Network Conference 2013 – See you in Georgia!
This weekend, I will be speaking and signing books at the 28th Annual Narcolepsy Network Conference in Atlanta, GA. This is always an exciting weekend for me – as I get to see old friends and meet many new friends! Books: I’m offering a discount conference rate on personalized signed copies of Wide Awake and…
Read MoreJoin Us: FDA Initiative Wrap-Up Webinar
The FDA meeting was an amazing experience. Let’s re-cap and look ahead to the future! What: Unite Narcolepsy Wrap Up WebinarWhen: Thursday, Oct. 10, 2013 at 2:00 p.m. ETDescription: We’ll recap what happened at the FDA meeting, review ways that patients and other stakeholders can offer their perspective to the agency, and look ahead at…
Read MoreFDA Narcolepsy Meeting Video – Watch Now!
The Webcast Recordings of FDA’s Narcolepsy Meeting on Sept. 24, 2013 are now available. Watch Here: PART 1 – Opening to Break PART 2 – Break to Closing Get Involved: REM Runner’s Recap and Photos Take the Unite Narcolepsy Survey Submit Comments to the FDA Docket
Read MoreNarcolepsy Community Sets Record Participation in FDA’s Patient-Focused Initiative
“We are a bunch of deeply motivated people doing everything in our power to live full lives.” – Saraiah, Narcolepsy Advocate Leading up to the FDA Narcolepsy Meeting on Sept. 24, 2013, I traveled to FDA’s campus four times, wrote 15 blog posts, co-led the Unite Narcolepsy initiative, co-presented webinars, wrote FAQs, and coached panelists – yet nothing…
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