Narcolepsy in the Classroom – Web Broadcast Event

by julie on February 5, 2013

Families of children and teens with narcolepsy are invited to attend this special event on Saturday February 9th from 2-4 p.m. (EST) at Children’s National Medical Center in Washington D.C. 

LIVE INTERNATIONAL BROADCAST:

You are invited to participate in a live internet broadcast as experts speak on “Narcolepsy in the Classroom” on Saturday Feb 9, 2013 from 2-4 p.m.(EST). Instructions for joining the broadcast appear below. View Facebook Event 

When narcolepsy strikes children and teenagers, the disease frequently affects learning and behavior at school. Learn how to support children and teens with narcolepsy in academic success by joining a live internet broadcast from Children’s National Medical Center in Washington D.C.

SPEAKERS:
Dr. Judith Owens, MPH, D, ABSM
Director of Sleep Medicine at Children’s National Medical Center
Dr. Owens will discuss what narcolepsy is and how it affects each child differently.

Ms. Kathy Zeisel, Esq.
Supervising Attorney, DC’s Children’s Law Center
Ms. Zeisel will discuss educational accommodations, and using 504 and IEP plans in the U.S. public school system for children with narcolepsy.

Ms. Julie Flygare, JD
Writer and Narcolepsy spokesperson
National Institutes of Health Sleep Disorder Research Advisory Board Member
www.julieflygare.com
Ms. Flygare will read from her memoir, Wide Awake and Dreaming, on the effects of narcolepsy on academic performance.

This event is jointly sponsored by the Narcolepsy & Hypersomnia Support Group of the Greater Washington D.C. Area and Children’s National Medical Center.

To join the live web broadcast: You will be able to see the live broadcast via computer, and simultaneously hear it by calling a toll-free number by telephone.

First, use your computer to see the live broadcast video:
1. Go to https://childrensnational.webex.com/childrensnational/onstage/g.php?d=668553079&t=a
(If clicking on the link doesn’t work, copy and paste this link into your browser)
2. Click “Join”.
3. Follow the instructions that appear on your screen to log into the meeting BEFORE following the dial-in instructions on your screen.

Second, use your telephone to hear the event:
When you enter the meeting page, WebEx will prompt you to set up your audio conference. You may either have the WebEx program call your telephone, or use your telephone to call a toll-free number.
Either:
Select the “Call me at a new number” option and enter your telephone number, and the Web Ex program will call you. Please mute your telephone line by pressing *6, unless you are asking a question during the Q & A period.
Or:
Select the “I will call in” option and follow the instructions listed:
U.S. Toll Free Meeting Dial in Number: 1-877-668-4493
Click here for a list of global Toll Free call-in numbers: https://childrensnational.webex.com/childrensnational/globalcallin.php?serviceType=EC&ED=105398787&tollFree=1

Enter the meeting number/access code: 668 553 079
Enter your personalized attendee number.
Please mute your telephone line by pressing *6, unless you are asking a question during the Q & A period.

View Facebook Event 

Mark your calendar now for the next Family Support Group meeting on Saturday March 2, 2013 from 2-4 p.m., in conjunction with the National Sleep Walk on March 3, 2013 in Washington DC.

{ 8 comments… read them below or add one }

Janice Brennan February 6, 2013 at 6:16 pm

Hi Julie,

Thanks for posting this. I don’t live in the DC area but have family there and am trying to get someone to go to this meeting. Is there any chance they will videotape it? If you could post some advice on your blog that would be great too.

My son was diagnosed with narcolepsy last summer and I am starting the process of getting a 504 plan approved for him.

Your blog and facebook page have been a wonderful resource for me who is new to this disease. Thanks!!

Reply

julie February 6, 2013 at 6:27 pm

Hi Janice,
I *believe* the meeting will be video-taped and streamed online around the world! I will post details on my blog and facebook as soon as I know more.

I’m so sorry your son was recently diagnosed w/ narcolepsy. Thank you for supporting his experience, this is invaluable for his success living with narcolepsy.

Thanks for following my blog and Facebook page! With gratitude, Julie

Reply

AshLynn February 9, 2013 at 3:34 am

Will this be aired at another time as well? I have a prior commitment and won’t be able to phone in or watch. My daughter was diagnosed with narcolepsy last December. We have a 504 plan in place at her school. Thanks;)

Reply

julie February 10, 2013 at 5:41 pm

Hi AshLynn, Thank you for your interest in the Narcolepsy in the classroom event. It will be available online sometime next week. I will publicize on my blog as soon as it’s available.

Reply

AshLynn February 18, 2013 at 9:26 pm

Thank you very much:)

Reply

Nancy Waldman February 10, 2013 at 6:03 am

HI Julie, I will check your blog to see if the talk was videotaped. My daughter is in 7th grade and has narcolepsy with cataplexy. It has been a challenge and I’m not sure what accommodations would help her in school. She struggles with fatigue, attention, cataplexy and hunger. I look forward to watching the video.

Reply

julie February 10, 2013 at 5:44 pm

Hi Nancy, I’m sorry to hear that your daughter has narcolepsy with cataplexy in the 7th grade. I can imagine it is very challenging. My thoughts are with you and your family. The video will be online sometime next week and I will share on my blog. Thanks again, Julie

Reply

JudePNP March 2, 2013 at 9:12 pm

I live in a whole family of narcoleptics, most with cataplexy. My oldest daughter is now 19 and had symptoms from age 11; My second daughter also some behaviors starting from age 2, but was not significantly affected until age 12; My 3rd daughter was the energizer bunny until the fall she turned 14. Her onset was far more sudden than her older sisters. She also has insane leg muscle fasciculations when she sleeps. She has had the most difficult time of them in terms of interfering with school work because she has the double sleep whammy. My youngest daughter is 11 and showed some signs of blending sleep/wake cycles early on and is now becoming more significantly affected. I am also narcoleptic as was my father. We apparently carry the gene marker for narcolepsy and none have escaped expressing true symptoms. Sleep paralysis, automatic behaviors, sleep walking and acting, sleep eating, sleepiness, blending dreams with waking state and cataplexy are just a few of the issues we experience on a daily basis. Interstingly, my grandson at just a few months of age is exhibiting signs of cataplexy. He’s a very good natured baby. The times I have seen him actually cry hard….he instantly goes to sleep. There’s nothing to do about it right now, but I have a sleep neurologist looking at him to make sure we do everything we can. There is some evidence, he says, if you catch it early, you might prevent some of the progression. We’ll see.

Oh, my third daughter’s school and teachers have been AMAZING, with their understanding. They push her to do her best and don’t give her excuses, but completely believe her when she goes through an episode and misses things in the classroom. There was a time when teachers who were aware were quick to embarrass her if she nodded off in class as though that would be helpful in preventing the sleep attacks.

Is anyone dealing with narcolepsy and deciding on driving for a teen ager? In some states it’s illegal to drive with narcolepsy, but ours isn’t one of them. I’d love to hear you thoughts.

Reply

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