Category: "Awareness"

Narcolepsy: Not Alone -- Time to put Kansas on the map. #narcolepsynotalone

This has been kind of a strange weekend.... but it all started on Thursday, July 25th, when I got a Facebook invite from Julie Flygare to some "Narcolepsy: Not Alone" Event....

Reading the details about it...it seemed complicated, since I'm still alone....but I soon decided that I was going to do it and starting putting the plan into motion. And, I knew just the gadget to help make this possible....on July 28th, I remembered to go online to look for it. Fortunately, the first place I thought of had it...though sadly its no longer available: http://photojojo.com/store/awesomeness/collapsable-camera-extender/ (unless it comes back...)

Free shipping gave a range 10-15 days (Aug 7-12?), though in reality it didn't take that long...arriving on July 31st....just under 1.5 days in shipped to delivered.

I then worked on the other details of my plan. I was going to start with the provided sign with a small tweak....though the sign is centered, so I needed to move the text up a bit to make the tweak fit. I wanted to drop a safezone symbol onto it. Though finding a safezone graphic was harder than I thought, but eventually I found something. I used gimp to lay the images together and printed it out.

It looked good, though the "Narcolepsy: Not Alone" was kind of light. I figured I would just need to reprint it later using high quality mode on my inkjet printer. The next step was to figure out when I would actually take this picture.

Lawrence Chen -- Narcolepsy: Not Alone in Manhattan, KS

Full story »

Narcolepsy Infographic

Narcolepsy Infographic: What is Narcolepsy?

Meanwhile, I just remembered to pledge for birdies....

Link: http://www.nicolejeray.com/pledge-now/

I just remembered to pledge for birdies again with Swinging for Sleep for 2013. I'm sticking with $1 per birdie....

WUNners Safe

Link: http://wakeupnarcolepsy.blogspot.com/2013/04/wunners-safe-after-marathon-tragedy-we.html

Just read that all the WUNners weren't near the blast site at yesterday's Boston Marathon. Still makes for an emotional day on many other fronts.

This was the first year that I donated to this.

Marathon donors contributed more than $52,000 towards Narcolepsy research.

Prescription Drug User Fee Act -- Patient Focused Drug-Development -- Docket Number FDA-2012-N-0967

Link: http://www.gpo.gov/fdsys/pkg/FR-2013-04-11/pdf/2013-08441.pdf

Last year the FDA soliciting public comments to narrow down the diseases to focus on for its Patient-Focused Drug Development Initiative, which has the goal of obtaining the patient's perspective on certain disease areas during the five period of the PDUFA (Prescription Drug User Fee Act) V. To assess a product's benefits and risks involves an analysis of the severity of the condition treated and the current treatment options available for the given disease. This information is a critical aspect of FDA's decision-making as it establishes the context in which the regulatory decisions are makde. The FDA believes that drug development and their review process could benefit from a more systematic and expansive approach by obtaining the perspective of patients on disease severity and current available options in a therapeutic area.

They had nominated 39 diseases, where narcolepsy was one of them, and were looking to narrow the list down to 20.

And, the result is Narcolepsy got selected! :cool:

Even though there were directions on how to make the comment anonymously, I choose to include my name and I had gone with greater emphasis for Narcolepsy since it was my most recent diagnosis, and since it was first brought to my attention during the after dinner conversation aboard the Nautica Queen....though we Narcoleptics tend to have more than one thing wrong...and perhaps someday I'll get to know what my current problem is called (something I've had over over 10 years now, but only started getting really bad the shortly after the conference.)

The conference was October 19-21, 2012...I got back on the 23rd, and wrote the letter on the 24th. Since I had book Wednesday to Wednesday off from work for the conference....

The resulting list for FY 2013-2015 are: Alpha-1 antitrypsin deficiency; breast cancer; chronic Chagas disease; female sexual dysfunction; fibromyalgia; heomphilia A, hemophilia B, von Willebrand disease, and other heritable bleeding disorders; HIV; idiopathic pulmonary fibrosis; irritable bowel syndrome, gastroparesis, and gastroesophageal reflux disease with persistent regurgitation symptoms on proton-pump inhibitors; lung cancer; myalgic encephalomyelitis/chronic fatigue syndrome; narcolepsy; neurological manifestations of inborn errors of metabolism; Parkinson's diseases and Huntington's disease; pulmonary arterial hypertension; and sickle cell disease.

There will be another public process to determine the list of disease areas for FY 2016-2017.

Wonder what the future meetings will be....

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