SPREAD THE WORD
Narcolepsy needs awareness. Desperately. Most people, including doctors, are woefully misinformed about the illness. Help us spread the word by sharing my blogs, social media posts and videos using #WakeUpDylan. If you work for any sort of media outlet or know someone who does, I would encourage you to do a story about narcolepsy. Narcolepsy rarely receives any media attention which is often the best way to spread awareness. Information and education are powerful tools particularly for dispelling commonly held beliefs that narcolepsy is a trivial disease with a few funny and inconvenient symptoms. The more you know about narcolepsy, the less likely you are to say “you’re so lucky your son sleeps so much!”
MAKE A DONATION
Every little bit counts. There are a number of ways to contribute and a variety of organizations to support.
The Paediatric Sleep Disorders Clinic at SickKids Hospital in Toronto, Canada is dedicated to providing comprehensive evaluation and treatment for a wide range of sleep disorder such as obstructive sleep apnea, narcolepsy, nocturnal hypoventilation in neuromuscular and genetic diseases, children in respiratory failure and sleep-related behavioural problems in neuro-developmental disorders. You can make a donation to the Sleep Disorders Priorities Fund via my personal fundraising page by clicking here.
Wake up Narcolepsy is a nonprofit organization dedicated to speeding narcolepsy diagnosis through greater awareness and funding medical research to find a cure. You can make a donation to Wake Up Narcolepsy directly by clicking here.
In the alternative, you can donate via AmazonSmile and iGive by purchasing items you would normally buy and a percentage of the purchase price will automatically be donated to Wake Up Narcolepsy.
- Amazon donates 0.5% of the price of your eligible AmazonSmile purchases to WUN.
- AmazonSmile is the same Amazon you know.
- Same products, same prices, same service.
- Sign-up is quick and easy.
- Shop at 1,500+ stores you already know.
- A percentage of your purchase is donated to Wake Up Narcolepsy (average 3%).
- The stores pay for it all.
- You never pay more, and sometimes you save with coupons and special deals.
- Sign-up is a snap!
Narcolepsy Network is a national patient support organization founded in 1986. They are a nonprofit organization that relies on member dues and donations to fund their basic programs. Their primary focus is to:
- Educate and inform individuals with narcolepsy about this life-long neurological sleep disorder, available treatments and symptom management so they may be empowered to achieve the highest quality of life possible;
- Provide emotional support and resources to patients, family members, and friends;
- Encourage and assist in the formation of local support groups and other support systems;
- Serve as a resource centre for patients, medical providers, educators, employers, and members of the public;
- Advocate for the interests of all persons with narcolepsy;
- Promote early diagnosis, optimal treatment and scientific research;
- Increase public awareness of narcolepsy
The work of the Network goes beyond each of us who has narcolepsy. It extends to the media, governmental agencies, researchers, physicians and other healthcare professionals as well as to family and friends. Help us meet our goals by becoming a member or making a tax-deductible contribution today!
4 thoughts on “Want to Help?”
Another place that will contribute to your favorite non-profit for you is welzoo.com. Every little bit helps. (Will you forgive me if I “borrow” the layout and some text from this page to my own blog? It’s so nicely done. 🙂 )
I am a sleep physician,usually treating adults. If you provide me with Dylan’s medication schedule, maybe I can be of assistance in improving the control of his narcolepsy/catalepsy. David W. Hudgel, MD, FACP
LikeLiked by 1 person
Thank you so much for reaching out Dr. Hugel. I am truly touched and very grateful for your offer to help. Dylan is currently taking Xyrem and Clomipramine. He takes two 3g doses of Xyrem and he takes 40mg of Clomipramine. He gets about 5-6 hours of sleep at night with the Xyrem. The Clomipramine definitely helps with his cataplexy, in that it’s much worse without it, but despite the Xyrem and antidepressant, his cataplexy is still quite debilitating. He’s previously tried Biphentin, Ritalin, Prozac, Effexor, Modaflin and tryptophan. We are thinking of trying Baclofen. Any input or suggestions you might have would be greatly appreciated. Thank you very, very much.
If Dylan is well controlled with pharmaceutical meds, then keep on doing what you’re doing. In my personal world, I suffered for nearly thirty years with daily cataplexy. In my search for improved deep sleep, I started taking about a half a grain of rice worth of INDICA cannabis oil. Imagine my surprise when the cataplexy disappeared. I have written about this extensively on The Narcolepsy Network Forum. Search there for “Cannabis Oil Round Three” and you can read for yourself.
I have not had much success with pharmaceutical meds but everyone is genetically unique.
I want you to know that Dylan can have a successful, rewarding and happy life even with N with C. I’m proof.