No Sleep? Funky Things Can Happen

You haven’t slept for what feels like an eternity, coffee cannot keep you awake anymore even after drinking the strongest espresso you can brew – you are sleep deprived.

A while ago you finally manage to fall asleep and all is peaceful; the next moment you are awake again and are unable to move. Hallucinations occur and it seems you are going nuts – funky things are happening.

“A 2011 review of studies published in Sleep Medicine Review revealed that 7.6 percent of the general population experiences sleep paralysis at least once in their lifetime. It’s even more common in students — a population not surprisingly sleep deprived — at 28.3 percent. The percentage is even higher in people with psychiatric disorders, at 31.9 percent, and particularly high in those with panic disorder: 34.6 percent.” – Liz Zabel, The Gazette.

Funky things happen because with sleep deprivation, our bodies do not enter the REM (rapid eye movement) state, the most restorative sleep cycle, vital for a good rest. And if a REM cycle is interrupted – you waking up suddenly for example – it can result in sleep paralysis. What happens is while the brain is awake and active, the body is still ‘asleep’, and you cannot therefore move. The brain then can start producing visual, auditory and in some cases physical hallucinations.

Dr. Mark Eric Dyken, a neurologist at University of Iowa’s Sleep Disorders Clinic, explains that to enter REM sleep it takes 60 to 90 minutes, if you are sleep deprived however, the body “nose dives” into it. The paralysis is “a natural process of REM that keeps you from acting out your dreams”.

According to Dr. Dyken, the disorder is linked to narcolepsy, yet one can experience it at least once in life, in particular if one is sleep deprived. This disorder is not widely known, due to the stigma associated with its symptoms.

Dr. Andrew Peterson, medical director at the Eastern Iowa Sleep Center, advises trying to get better sleep, reserving enough time for sleep – 8 hours if you are 25 and older – and keeping a routine of going to bed and waking up at the same time each day. There are antidepressants and other drugs that can help, none without side effects.

Read more at: http://www.thegazette.com/subject/life/people-places/sleep-paralysis-a-feeling-of-being-conscious-and-unable-to-move-hits-sleep-deprived-hard-20150827

Make the most out of CheckOrphan

Here we explain all you can do at checkorphan.org in order to make the most out of our services.

News

Stay up to date. A very important feature of CheckOrphan’s platform is the daily news. CheckOrphan is the largest source on the web for rare diseases. Every day we comprise news involving the rare disease community from a great variety of sources and post them on our website.

Expand your network. Send your content to the following email addresses and we will publish them on our website and/or blog:

  • News articles and press releases to news@checkorphan.org
  • Opinion pieces to rare.diseases@checkorphan.org (attn: Blog)
  • Videos to rare.diseases@checkorphan.org

The news articles and press releases will be published on the next edition of our daily Newsletter and reach hundreds of people.

Daily Newsletter

Subscribe and receive our free newsletter every day.

Event Calendar

Submit your events to CheckOrphan to help attract more attendees. Also contact us at rare.diseases@checkrphan.org about our free media partnership to help promote your event more effectively.

Databases

Find more information about a rare disease you are interested in here. CheckOrphan’s rare disease database has nearly 7000 rare diseases. Through each page, we offer information regarding the diseases’ symptoms, available treatments, causes, etc.  Each disease page is also linked to related news, events and research.

Learn more about a rare disease here.

Treatment Database

CheckOrphan also has organizations and treatment databases.

Companies can add their products or update a product page in the treatment section of our website. This section is a window to find treatment options for various diseases.

Link Network – Companies, Patient Organizations, Hospitals, Research Centers and more

Enter your company, association, hospital, clinic, or research institute for more visibility. Here you can submit information about your work and be part of CheckOrphan’s network.

Support & Connect

A great way to support this cause is by Sponsoring a Rare Disease Page or donating any given amount and Become a Champion. Your support makes a real difference.

Where do your donations go?

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We are also very active in different social media platforms. Connect with us to expand our network and create awareness about rare diseases among your friends too.

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Projects & Campaigns

At CheckOrphan, we keep moving and evolving. Be a part of it! We are currently working on Make a RareIMPACT, an ongoing campaign to get as many Rare Disease Pages as possible sponsored.

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"I Challeng Rob" Win an iPad 3 4 categories and many prizes click to learn more

Join the “I Challenge Rob” contest and support rare diseases

Are YOU up for a Rare Challenge and a chance to win an Apple iPad 3? (Launching in March)

Or if you are a company, organization, academia or celebrity/politician/sports figure you can win prizes too!

My name is Rob Derham, Founder and President of CheckOrphan (501c3 non profit).  Are you ready to make a difference for RARE DISEASES by challenging me “Rob”?

From February 14 – March 17 in honor of World Rare Disease Day (February 29):  If your network of people can raise more donations than all other participants in that period – then you will win an Apple iPad 3 and be highlighted in the news!!

Entry Categories

  • Private Individuals – Apple iPad 3 Contest
  • Celebrities, Politicians, Nobility, Sports Figures Category
  • Company Category – Logo on CheckOrphan
  • Organization – Logo on CheckOrphan
  • Academia – Logo on CheckOrphan

Get started – How  “I Challenge Rob” Works

  • IMPORTANT:
    • Private Individuals
      • Become a Champion and make a donation of $1 or more, or Sponsor a Rare Disease Page.
      • During the payment process, in Step 3, click on the circle “Yes, I want to win an iPad 3”.
      •  Then enter the name you want to use as a Challenger in the contest in the box below. This can be your real name or a code name ( (Ex. Mister Network) and finish the payment process.
      • Contact your network of family, friends, social media, work colleagues and others and give them your name.


    • Entities
      • Become a Champion and make a donation of $1, or more or Sponsor a Rare Disease Page.
      • In Step 3 of the payment process, when you add the name and link for the company, this will enter you in the contest once your payment is complete.
      • Contact your network of family, friends, social media, work colleagues.
  • All donations are tax-deductible.

Tips:

  • Use Facebook to create an event and invite all your friends or fans (entities)
  • Use as many social media platforms available to get the message out and to thank your network once they donate.
  • Persuade your company or organization to support you by matching whatever funds you raise through your network with your name as the challenger.
  • Create a video and put it in social media
  • Concentrate first on 10 people who will really know well and ask them to try and set a goal to get 10 people from their network
  • Then look at people who always forward you emails. Ask them to join in this great cause and to refer you!!
  • Email campaign
    • Start with a personal email to all your contacts individually
    • Use some of the facts about rare diseases below
    • Add links in your email to the videos that show how your network can donate with you as the challenger
    • Then use MailChimp to give them updates on a weekly basis throughout February with friendly reminders to show their support for you and rare diseases
    • Include educational and persuasive videos from CheckOrphan’s video archive
    • Build momentum as March 17 approaches

Prizes

If your network raises the most funds through any combination of donations or rare disease page sponsors , you will win the following:

Private Individuals

  • iPad 3
  • News article about your success in raising awareness
  • Free access/attendance to a rare disease conference

Celebrity / Politician / Nobility / Sports Figure Category

  • Personal video on CheckOrphan that appears in all news articles for one month (optional)
  • Key note address at a Rare Disease Conference (optional)
  • News Article on CheckOrphan

Entities (One Winner from each of the 4 Categories mentioned above)

  • Your logo linking to your homepage at the top of every page on CheckOrphan for one month
  • News article about your entity

Rules

  • Any sexist, racist or vulgar referral names will be removed and you will be disqualified. Please, be considerate. Rare diseases are a very serious issue for millions of people whose lives are devastated by them.
  • No cheating, but fair creativity is encouraged
  • You cannot use “I Challenge Rob” to promote products, religion, politics and so forth, but you CAN use it to promote CheckOrphan and rare diseases
  • Neither I nor CheckOrphan is responsible for any taxes incurred if you win

How “I Challenge Rob” Started

The “I Challenge Rob” campaign unfolded after talking with some friends about how we can make a further impact for rare disease. A couple of them responded to my challenge by offering to raise more funds through their network of people than through mine. With each of us having a passion for rare disease awareness and wanting to make a difference in the rare community, the concept of “I Challenge Rob” was created.

About Rare Diseases:

As the Founder of CheckOrphan, I am deeply affected by patients, researchers and many others in the rare disease community who are neglected by the media and society due to the fact that individually, rare diseases do not affect a lot of people. However the reality and results of isolation and neglect to communicate the needs of the rare community greatly impacts the care and treatment options available to those whose life is changed forever by a rare disease.

IMPACT – facts about rare diseases

  • There are roughly 7000 rare diseases and less than 5% have a treatment or cure
  • Nearly 1 in every 10 people has a rare disease
  • About 70% of rare diseases affect infants and children – most will never make it past their teens
  • In the US and the EU alone there are over 60 million people living with a rare disease
  • Diagnosis of a rare disease typically takes 2-3 years, with an average of 2 or 3 misdiagnoses along that odyssey.
  • Rare diseases are an enormous social and economic challenge for society and quite often, a rare diagnosis leaves families in financial despair

CHECKORPHAN

That’s why we need YOUR voice! The Rare Disease Community needs the power of communication and knowledge to make a difference in the health of their lives.  CheckOrphan gives everyone the opportunity to communicate what they are doing for the rare disease community by allowing them to submit news, videos, links, events and more. CheckOrphan is solely dedicated to promoting and informing the world about their needs and offering unique solutions that help them along their path to a cure and a better future for us all.

How Will The Campaign Funds Be Used?

  • CheckOrphan promises to keep the information and ability to submit content-free for all
  • Over 95% of funds go directly into producing what you see on CheckOrphan
  • CheckOrphan will provide more content through more partnerships
  • New projects:
    • Global Rare Disease Registry
    • Science Journalism Program
    • Professional Working/Collaboration Platform for the rare disease community

Thank you for joining the cause!