Narcolepsy
Dear Diagnosis Blogathon
If you could go back and speak to yourself on your diagnosis day, what would you say? “Dear Diagnosis” is a Blogathon inviting all narcolepsy and chronic disease bloggers to write a letter to yourself on your diagnosis day. BLOGATHON PARTICIPANTS: An Unnatural Athlete – “Dear Jill” Norexin – “Dear Meaghan” Guest Post –…
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 MoreBeauty OR The Beast? Napping with Narcolepsy
I nap once or twice (or three times) every day. While napping, I may look like Sleeping Beauty, but waking up – I’m never quite sure who I’ll be – a kind calm beauty OR an angry beast. The trouble with napping: For me, napping is not pleasant. My naps are high-speed rollercoaster rides of…
Read MoreOver 140 People at Narcolepsy UK Conference 2013 Say NARCOLEPSY: NOT ALONE
Guest post by Narcolepsy UK: Narcolepsy UK held its latest conference in Watford, just outside London, on Saturday, Sept. 14, 2013 and it was a great success. Our speakers were Dr Cathy Hill, a specialist in sleep disorders in children, the Medical Detection Dogs charity, fiction author Sue Moorcroft and her research into creating a…
Read MoreA Unique Love Story: NARCOLEPSY: NOT ALONE’s Wedding Moment – Guest Post by Samantha Vandeberg
Guest post by Samantha Vandeberg: “Family” is a rather confused and distorted idea for me. During my adolescence, I became the child forgotten and learned that blood family didn’t necessarily equal love and support. My grandmother had raised me with endless love and beauty. She died when I was 13 and there was not a…
Read MoreJulie Flygare Featured on BBC Radio Cambridgeshire
This Sunday, Sept. 29, 2013 at 6:00 p.m. (BST), I will be speaking about narcolepsy on BBC Radio Cambridgeshire’s program, The Naked Scientists. This show, “WAKE UP – The Science of Sleep,” is a fascinating discussion about sleep! LISTEN NOW: http://www.thenakedscientists.com/HTML/content/interviews/interview/1000425/
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…
Read MoreAttending Global Genes Patient Advocacy Summit 2013
Last Friday, Sept. 20, 2013, I attended the Global Genes Patient Advocacy Summit 2013. The Summit brought together rare disease advocates from across the country to share our experiences and learn from experts. The day started with a fantastic panel about the importance of self-care. Often, patient advocates and caregivers leave little time for themselves.…
Read MoreShining a Spotlight on Narcolepsy at FDA
Today’s the day that narcolepsy shines in the spotlight! In a few hours, I will be at FDA for the Narcolepsy Patient Focused Meeting. Joining me will be over 100 narcolepsy patient advocates in-person and over 500 more via webcast around the world. We will share our stories and help FDA better understand the REAL…
Read MoreUnite Narcolepsy Interim Survey Results Paint Honest Picture of Challenges Facing Narcolepsy Community
In just six week, the Unite Narcolepsy’s patient survey has collected over 1,350 responses, including over 1,000 responses directly from patients diagnosed with narcolepsy. The survey results paint a powerful picture of the challenges facing the narcolepsy community – including extensive delays in diagnosis and many unmet medical needs. The Interim Survey Analysis will be shared…
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