Monday, March 17, 2014

Fundraiser for the Narcolepsy Network’s Narcolepsy conference

Good morning, and Happy St. Patrick’s Day, dear readers!

Today I wanted to talk briefly about the Narcolepsy Network’s annual Narcolepsy conference, specifically about their effort to raise funds for scholarships to the conference.

For those of you who are not familiar with the conference, it is a conference that brings together people with Narcolepsy and their supporters and medical professionals.  I myself have not been, but I have always wanted to go, and I hope to be their this Fall.

(Even if you are not interested in the scholarship effort, I highly recommend viewing the video on the conference which is on the scholarship effort website because it is the best video on the conference that I have seen.  It is a great introduction to the conference, and the website also contains good information about the conference, for people who are interested.)

This year, the Narcolepsy Network is raising money to fund scholarships to help “give PWNs who otherwise could not afford to come the opportunity to learn from the experts and engage with their peers in an atmosphere of caring and support.”  Their goal is to raise $10,000 by the end of March.  Currently, they have raised $5,315, which is great, but the end of March is fast approaching!

I wanted to share with you a letter I received from the Narcolepsy Network today about the scholarship fundraiser. 

“Dear Ellie,

We have exciting news about our conference scholarship fundraiser.  A very generous family has come forward with a matching gift.  For every dollar you donate in the next two weeks, our matching gift family will donate the same amount, up to $2,000!  For example, if you give $50, they will give $50 too, meaning the scholarship fund receives $100.  By giving now, you can double your money for conference scholarships.

Don't miss this opportunity to help us give those with narcolepsy who otherwise could not afford to come an opportunity to attend our conference in Denver this year. Please visit our scholarship contribution fund page to make a contribution today! With our match gift, your tax-deductible donation, no matter the amount, will go even farther to help make the NN conference a reality for more people.

If you prefer to make your donation by check, please mail your donation to Narcolepsy Network, 129 Waterwheel Lane, North Kingstown, RI 02852 (and put "CSF" on your check).

Thank you to everyone who has already made a donation. We are grateful for your support!

Sincerely,

Eveline Honig, MD, MPH

Executive Director, Narcolepsy Network

P.S.  If you can't afford to make a donation, you can still help. Please share our scholarship contribution page with your friends and family and encourage everyone to take advantage of this exciting matching gift!”

Even if you aren’t interested in the scholarship effort, I would encourage any Narcoleptic who doesn’t already know about this conference to check out the website and learn about the conference, if only so that you know that it’s out there if you should ever want to go…  The video is only 6 minutes long and the it’s only about one page of information.  And who knows, if it interests you, maybe you might want to apply for one of the scholarships in April, right?

On a more personal note, I have recently moved back to the U.S. and am now living in New Hampshire, as my husband and I are getting divorced.  Things are good here though and I’m happy to be back in the good old U.S.A.

God bless!

3 comments:

  1. I was aware of this and it's a fantastic cause. Well done for promoting it and helping them to raise money to help thousands of people that need it. You're doing great work here, keep it up!

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  2. A little off this topic but still on Narcolepsy. The Dr. said I had it a year ago, but I resisted letting him diagnose me because of my own ignorance, Since then it has gotten much worse, especially with me running late and having to take days off, even though my performance it good. A disciplinary board received a complaint about me, apparently because I was doing some automatic behaviors and this board, disliking me anyway it really putting me under the microscope. While they know I have a "sleep disorder" they don't know it it narcolepsy and I know that it can be protected by the ADA. My biggest problem though is I have two very fine lawyers who think like I did a year ago, that this is just a case of laziness and if I would just go to bed earlier, get up earlier, go running and take the right vitamins, this would all go away. Believe me, I have already gone through all that guilt. But we are close to having too reveal narcolepsy to use as a shield and I think they think it is just a B.S. diagnose, a reason to "get high" on .Adderal. One even looks up the "max. dose of Adderal on the we (60mg) and tells me the sleep doctor is prescribing me too much. Of course if I didn't take 70mg of Vyvanse and 3 30 mg of Adderal a day I would just sleep all day. Anybody had this problem?Thanks to anyone who can help as I will be out of a wonderful job pretty quick if we don;t do something. And it is hard to complain when 2 good lawyers are doing the work gratis,

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    1. Joseph, I would suggest that you e-mail me at my e-mail address nisfornarcolepsy@gmail.com, and when you do, can you please copy paste the content of your post for me in your message so that I can remember what you said on my site, as I have many people posting on my site, so I will not be able to remember what you said... If you have been diagnosed with Narcolepsy by a doctor, then you ARE WITHOUT QUESTION protected by the non-discrimination clause of the ADA. But second, if you are officially diagnosed with Narcolepsy, then it is insulting that anyone would suggest that you are abusing Adderall, however you are taking taking such a disturbingly high dose that one would worry about your health and having mental health side effects which can start at 60 mg, but since you are saying that you are still tired on that I am thinking you probably are needing a different medicine or something different... also we'll have to talk about this 15-20 minute scheduled nap thing I do which is annoying but may just save your life. sounds like your dr. might not be the greatest either, so perhaps you may need to look for another, if that is an option, but if you are willing to do the work with any talking that we do because I am busy too, than contact me.

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