Children with Narcolepsy
Supporting a Friend With Narcolepsy
If your friend or loved one was diagnosed with narcolepsy, you may wonder the best way show support. You want to help your friend through this difficult time, but it can be hard to know what to say or do. While there are no set rules for supporting a friend with narcolepsy, I hope these…
Read MoreMeet a Superstar: BMX Track Racing with Narcolepsy
Meet Xander, a 4-year-old superstar with narcolepsy living in Canada. Xander has big bike racing dreams and isn’t letting his narcolepsy slow him down. Watch Xander fly by in this video: This was Xander’s first Bmx Bootcamp for the season. Bmx track racing is a form of off-road bicycle racing, derived from motocross racing. I…
Read MoreWhy NARCOLEPSY: NOT ALONE Matters…
Why NARCOLEPSY: NOT ALONE matters: “You have touched my daughter in a way I don’t believe I could ever to make her feel. To see her excitement passing out the bracelets, sharing that she has narcolepsy and cataplexy and she’s PROUD, it’s such a great change for her.” -Karen, Kenya’s Mom “I just got my shirt in…
Read MoreMeet the Jack & Julie Narcolepsy Scholarship Award Recipients 2014
The Jack and Julie Narcolepsy Scholarship is delighted to announce that two recipients of the inaugural scholarship 2014 are Kendra Larrabee and Jacob Zeiher. We are thrilled to award both Kendra and Jacob a $1,000 scholarship toward their college education. The Jack & Julie Narcolepsy Scholarship is the first-ever scholarship supporting students with narcolepsy while also…
Read MoreSchool Accommodations for Narcolepsy
I compiled this list directly quoting people with narcolepsy and their family members who reported on accommodations received for narcolepsy during education (from grade school to graduate school). I’ve broken the accommodations into categories. Every student with narcolepsy is different. Every school is different. What works best for your student may be a creative combination…
Read MoreNarcolepsy 504 Plans for High School Students – Tips for Parents by Diana Brooks
REM Runner’s Note: Diana is the mother of Danielle Brooks – an amazing, artistic and athletic young woman with narcolepsy who created www.succeedingwithnarcolepsy.com. In this guest post, Diana offers insightful tips for navigating the school accommodations process and helping your student with narcolepsy succeed. Diana’s Guest Post: 1. You must be an advocate for your child. No…
Read MoreIntroducing the Jack & Julie Narcolepsy Scholarship
Today, I’m thrilled to unveil the Jack & Julie Narcolepsy Scholarship, the first-ever scholarship supporting students with narcolepsy while also raising awareness about narcolepsy in high school and collegiate settings. Beginning in 2014, one scholarship of $1,000 will be awarded to a high school senior who plans to attend a four-year university and exemplifies courage and…
Read MoreGuest Post: Dear Dylan – A letter from Jennifer to her son
Guest post by Jennifer to her son Dylan in response to the “Dear Diagnosis” Blogathon prompt. Read more letters and join us here. ———— Dear Dylan, Today has been a rough day for you. Your great grandma is being buried today and it’s triggered an emotional state neither one of us understands. We have both been…
Read MoreGuest Post: Dear Katie (A Teenage Narcoleptic)
Guest post by Katie in response to the “Dear Diagnosis” Blogathon prompt. Read more letters and join us here. ————- Dear Katie, Today you will be diagnosed with a sleeping disorder. Though you feel it is obvious that you have Narcolepsy, do not get upset that you are diagnosed with having Idiopathic Hypersomnia; trust me, it…
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
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