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Narcolepsy Canada Foundation


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#1 SleepyJenna

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Posted 22 May 2008 - 06:13 PM

THE NARCOLEPSY CANADA FOUNDATION IS UP AND RUNNING!
A WEBSITE IS IN THE PROCESS OF BEING MADE.....FACEBOOK GROUP EXISTS!

To increase awareness of Narcolepsy and its effect on people’s lives, and to help and support the thousands of Canadian children and adults affected by this debilitating and incurable disease.

*more information to come!




#2 excuses

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Posted 22 May 2008 - 10:02 PM

Hi SleepyJenna,
This is really good news blink.gif . Please let me know when the site is available. It would be great to be able to find out what help is available for Canadians. I have tried searching the internet, but was only able to find statistical information. The JAN website provides clear, easy to read and straight forward information to Americans about the American Disabilities Act,.

Good Luck,

Cheryl

#3 saide

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Posted 23 May 2008 - 11:28 PM

QUOTE (SleepyJenna @ May 22 2008, 04:13 PM) <{POST_SNAPBACK}>
THE NARCOLEPSY CANADA FOUNDATION IS UP AND RUNNING!
A WEBSITE IS IN THE PROCESS OF BEING MADE.....FACEBOOK GROUP EXISTS!

To increase awareness of Narcolepsy and its effect on people's lives, and to help and support the thousands of Canadian children and adults affected by this debilitating and incurable disease.

*more information to come!


I have hope!!! I joined this forum for the simple fact that it would soon have, Canadian content. However, after registering, I did take the time to read some of the posting topics and cannot believe how wonderful it is to know that there are other people, just like me, dealing with this every day of their lives. The discrimination at work, the coping at home, the complete misconception of what narcolepsy is from loved ones to complete strangers. I am so grateful for everyone's contribution on this site. I live in a very small community, so being able to get to the big city for any type of support is very challenging:single mum, work full-time, & my father (81yrs old) lives with me. It seems I can never escape in order to participate in a traditional support group or even therapy for that matter. It's been just over 3 years since my diagnosis and I needed this forum for it's unconditional understanding. I just wish I knew how to get more support, from the Canadian perspective (aside from this). I have been told by my doctor that I am well on my way to a very dark place=emotional breakdown?. My health is at great risk, too stressed emotionally and I am finding it difficult to stand up to those that are pulling at me, from every which direction, to try and live up to their expectations. Does Canada acknowledge &/or accept narcolepsy as a medical disability? Have I missed something? Shed any light, I have enjoyed/learned so much already. I need to continue this enlightment.

Sincerely, with all my heart -THANK-YOU!

Saide

#4 SleepyJenna

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Posted 25 May 2008 - 06:32 AM

I cannot take all the credit for this new coming foundation....Jay Da Costa is doing a lot of the work! I am just helping where I can!

Narcolepsy is a very frusterating disorder...I am 24 years old and I have soooo many fears of what my future holds...I finish my Masters of Education Dec '09 and I am so worried that I will never actually be able to teach...I worry about having children....my weight...I know that I cant be the only one with these worries and so I think it is very important that we come together and try to make a difference!

Narcolepsy_Canada@rogers.com
this is the address where Jay can be reached......we are both looking for as many people we can get to help out with the 'launching' of this foundation!

Jenna



#5 excuses

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Posted 28 May 2008 - 01:28 PM

Hi SleepyJenna,
I am really excited about this upcoming website. biggrin.gif I now belong to three support groups and rely on them for their nonjudgemental advice. The discussions and information received have been really helpful, but knowledge and recognition of this disability is not getting out to Canadians and Canadian health professionals. huh.gif The U.K and USA are both so far ahead with research, treatments, disability rights and accomodations, etc. I am currently dealing with fighting for permanent disability or returning to work and fighting for accomodation of disability privileges. I work for a large well-known University in Canada and it amazes me that I have to present them with information from the JAN website (Job Accomodation Network) that is governed by the American Disability Act (ADA). Canada does have many knowledgable sleep disorder doctors, but they, too, feel alone in their fight with medical authorities to have Narcolepsy and Cateplexy recognized as a severe chronic neurological disorder that needs to be recognized as such and patients treated according to this disability and not only as having an underdiagnosed "sleep disorder". Although this disability is not considered as fatal by medical terms, the consequences of this disability can be devastating to the lives of patients and others around them. Medications help control many symptoms, but we all know that they do not work 100%. Consequently, we continue to hear stories of cars driving into oncoming traffic, running red lights, disturbing incidents of abuse (child, spouse...) due to undetermined causes and the list goes on and on. ohmy.gif Canadian Medical Authorities MUST recognize the seriousness of this disability and if "A Support Website" can help promote this then I encourage all Canadians with and without this disability to become involved with the development of this website. In saying this, please count on me for assistance in which ever way possible. rolleyes.gif

Thank you for being proactive on getting this website up and running.

#6 mac

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Posted 15 August 2008 - 12:06 PM

Hi I just found out that I have Narcolepsy. I live in St. Catharines and looking a support group or groups. I also have trouble sleeping, I am lucky if I get an hour of sleep per day. I am looking for alot answers and help.

QUOTE (SleepyJenna @ May 22 2008, 06:13 PM) <{POST_SNAPBACK}>
THE NARCOLEPSY CANADA FOUNDATION IS UP AND RUNNING!
A WEBSITE IS IN THE PROCESS OF BEING MADE.....FACEBOOK GROUP EXISTS!

To increase awareness of Narcolepsy and its effect on people's lives, and to help and support the thousands of Canadian children and adults affected by this debilitating and incurable disease.

*more information to come!


#7 Mirianda

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Posted 04 November 2009 - 01:13 PM

Is this still active please send me an email. I have found no information on that website so please or else I will create something for narcoleptics in Canada my mission statement will be ready soon I have information on narcolepsy and if their is no not for profit organization I will make one I want the situation for Canadians to change thanks my email: narcolepsyweb@gmail.com


THE NARCOLEPSY CANADA FOUNDATION IS UP AND RUNNING!
A WEBSITE IS IN THE PROCESS OF BEING MADE.....FACEBOOK GROUP EXISTS!

To increase awareness of Narcolepsy and its effect on people�s lives, and to help and support the thousands of Canadian children and adults affected by this debilitating and incurable disease.

*more information to come!