People with Narcolepsy Pen Pals: Guest Post by Carrie-Ann Burns

by julie on August 22, 2013

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REM Runner’s Note: I have enjoyed watching the “People with Narcolepsy Pen Pal” program take off. This is a beautiful positively-spirited group and I’m thrilled to feature this guest post. 

Carrie-Ann’s Guest Blot Post:

Narcolepsy Pen Pals 2I would just like to thank Julie Flygare for the opportunity to share this group among her fans, followers and friends! I have created a “People With Narcolepsy Pen Pals” group. I just wanted to clarify this group was made for people who have Narcolepsy, but it is not limited to just that. It also welcomes those with loved ones, (can be friends, spouses or family), who suffer from Narcolepsy and would like to pen pal with people all over the world or in their own communities. They can correspond about Narcolepsy, their struggles or accomplishments, but it does not have to be related about their condition.

Narcolepsy Pen Pals 7Some who do not have Narcolepsy join this group in hopes of learning more, or corresponding with others who do, and the spouses or families of those who have Narcolepsy that have or will join the group can ask for help or advice, or even a better understanding of their loved ones condition. You can decide whether you wish to correspond through Facebook private message, Email or “Snail Mail”… This group was designed to have a more one-on-one personal conversation and connection, and to help others spread awareness and to help others who struggle with their condition, or loved ones who do.

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We have had such great success for the Pen Pal Group, and have almost 300 users and well over 500 exchanges, and members are located all over the world, and some have even met in person because of the group and have friends forever!

If you are interested in joining please send a request to the group on Facebook called, “People With Narcolepsy Pen Pals”! A link to the group can be found here.

narcolepsy pen palsAll that I ask is that you please read the following steps and rules when you are accepted upon joining to help give you an idea on how this group works and what you need to do! Be sure to state your preferences and also introduce yourself on the group wall!

  • To better explain how the group works please go to the this link.
  • To see examples of some introductions they can also be found here.

We are able to pair you with a pen pal if you wish as I am fairly good at matching members for their needs or interests, or you are able to choose your own. When you do please private message them for their postal address, addresses are not allowed to be posted in page for everyone’s safety!!

Narcolepsy Pen Pals 8If you would like more than one, or would only like one at a time, this is up to you! If you wish to stick with the same pen pal, this is also up to you and the other pen paler. We can rotate pen pals, or pull names out of a hat, basically however you wish to be paired or to select your own… Best idea is to, first initially read the introductions and see with whom you would be interested in exchanging letters with.

If you would prefer exchanging with the same sex only, or only within your country, this can be arranged given there is someone within your specifications…

Narcolepsy Pen Pals 9Please be sure to let me know what it is you decide to do, we need to also make sure everyone is included! Be sure to state whether you wish to only exchange pen pals with People With Narcolepsy only, or those with loved ones who suffer from Narcolepsy, or those without Narcolepsy interested in exchanging with those who do…

Please read this group’s rules (about section is too long when included). Thank you!

{ 8 comments… read them below or add one }

Carrie-Ann Burns August 22, 2013 at 11:45 am

Thank you again soooo much Julie you are amazing!!

Also i forgot to mention, “People With Narcolepsy Pen Pals”, has an Instagram, Tumblr, YouTube, and Twitter among other things!!

To see all of these profiles please go to http://itsmyurls.com/pwnpenpals !!!!!!!

Reply

julie August 23, 2013 at 4:18 pm

You’re so welcome, Carrie-Ann. I’m so excited to help spread the word about your fabulous group. Thank you for taking the time and energy to organize it! 🙂

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Phyllis Hasian August 23, 2013 at 3:13 pm

Julie, thank you so much for everything you do! People with Narcolepsy Pen Pals is a great group!

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julie August 23, 2013 at 4:18 pm

Thank you, Phyllis! Much appreciated.

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TheDreamer August 24, 2013 at 12:46 am

The links on how it works, examples and rules don’t work if you aren’t in the group….

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julie August 24, 2013 at 6:51 pm

Thank you for letting us know! Much appreciated. 🙂

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Crystal Parkes May 18, 2014 at 2:28 pm

Hello,
My name is Crystal and my 12 year old daughter is being treated for both narcolepsy and catalepsy. She had the unfortunate onset of symptoms just before starting the 6th grade and has since been having emotional issues with dealing as many kids have made fun of her for falling asleep in class and almost falling when she laughs. I have talked to her about joining groups, however, she is not really positive about it. I wanted to find a young woman would would be willing to help my daughter through her own experiences and accomplishments and would love her to have a penpal through actual us mail. I know my daughter is kind and if she received a letter in the mail she would engage with them and yet I can’t get her to sign up on the online sites. Please let me know if you have anyone or know how I would set something like this up by emailing me at mrsparkes77@gmail.com.

Thank you as I would be very grateful to have someone help her through this.

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Barbara Hopkins September 21, 2014 at 8:57 am

Julie I just wanted to say that Carrie has done a wonderful thing by starting our group. I am a member of the PWNs and it’s been a life saver for me. I had lost all of my friends, but now I have friends from all over the world. She deserves a medal. B

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