Ben's Friends Monthly Newsletter - July 2014 Issue

Just the Stats:

Welcome New Members and Greetings from Ben's Friends!

"You're a firework," as the song goes. We hope that you allow your colors to shine this month and always.

We are excited to welcome you whether you are a patient, survivor, family member, or a friend.
Our goal is to connect you with others so you don't feel alone, and/or if you don't want to overwhelm your family.
Help yourself. Explore your community. Write about your experience. Ask the community. Reach out to the community anytime you need support. This is your time to share your thoughts, feelings, and opinions.

Again, our warmest welcome to you.

  • Featured Spotlight: Co-Founding Member Scott Orn
  • Featured Content: What's New
  • Featured Member: Robert Martin of CIDP Survivor
  • Featured Caregiver: Matt Murphy of Amyloidosis Survivors
  • Picture of the Month

Ben's Friends Community Pool

  • Joke of the Month
  • Monthly Motivational Quote
  • Motivational Video
  • Did You Know?
  • Coming Soon
  • Did You Hear?
  • Your Feedback

Monthly Self-Talk Review

According to Professional Seth Godin, try adding the word "nearly", if you say something is impossible.

For example: "Eating independently is nearly impossible".

This one word shifts your mindset in achieving things.

Featured Spotlight: Co-Founding Member Scott Orn

How do you encapsulate all that Co-Founding Volunteer Scott Orn does for Ben's Friends?

"I do a little bit of everything," says Scott Orn. From greeting new members to volunteer moderating to heading the e-book project to ensuring the communities run smoothly to helping with the load of finance, budget, and grants, Scott wears many hats.
When asked what motivates him, Scott reveals that he sees it as 95% fun. That fun, in addition to the connections to others, the smiles from receiving many thank-you notes, and the impact that he has on others, drives Scott to be a volunteer for Ben's Friends and to be a better all-around person.
Scott is proud that Ben's Friends, which initially started as a need for Co-Founder Ben Munoz's recovery from a brain aneurysm, has grown into much-needed support for many with rare illnesses.
He concludes, "Thanks to all of our Members, Volunteer Moderators, and Donors. We are a little Internet miracle that exists because of this team."
If you would like to contribute and help the progress of thousands, click here:

Featured Content: What's New

Congratulations to Kalleigh of the AVM Survivors community for initiating, organizing, and developing (Arteriovenous Malformation) AVM Awareness Week from July 11-July 21.
For more information, read the post at:

Where's your health data history when you need it? Thanks to Ben's Friends new partnership with PicnicHealth, finding your medical records is as easy as...well, a picnic. For more information, click here:

Can we get a "wow"? The volunteers/moderators of the Erythromelalgia Community developed a quarterly newsletter for their group.

The Traumatic Brain Injury (TBI) Community and theCharcot Marie Tooth (CMT) Community both reached 300 members. We're growing!

Congratulations to Syd on AVM Survivors for making the U.S. Para Sports Team and for being a leader in what I consider the "I Can" attitude movement. For more information on his achievement, please visit Syd's page.

Featured Member: Robert Martin, CIDP Survivor
Laughter and keeping a sense of humor plays an important role in life, especially when a rare illness is concerned.
Enter: Robert Martin.
Robert is a newer member who embraces laughter and reminds us of the importance of humor.
For more information, visit:

Featured Caregiver: Matt Murphy of Amyloidosis Survivors
Is it impossible? Ask Caregiver Matt Murphy of Louisville, KY. He demonstrates to us through his actions that caregiving for his wife isn't even close to being impossible.
Joke of the Month

Question: How do you make seven an even number?
Answer: Take out the "s".
Monthly Motivational Quote

Be gentle with yourself. If you force the petals of the flower to open, you will destroy it; it will open in its own time, according to its own rhythm.
--Sue Fitzmaurice

Your dream is possible, keep hope alive.

Motivational Video

Did You Know?
Laughter is the best medicine, as the saying goes; however, an adult only laughs on average seven times per day, whereas a six-year-old laughs an average of 300 times per day.
Laughter lowers stress hormones and strengthens the immune system; laughter puts the brain in a meditative state.

What are some suggestions to boost your laughing average?
-watch a funny movie
-take a laughter yoga course
-find the humor in the mundane
-sign up to receive a daily joke-of-the-day email
-hang out with funny people.
For other trivia on the neuroscience of laughter, visit:
Coming Soon
We are excited to share a new look and voice to thenewsletter. Stay tuned for more interesting things coming soon.

Did You Hear?
"I am so thankful for this support group.
I think one of the hardest things about fibromyalgia is how debilitating it feels.
With not sleeping, the pain, the foginess, everything...makes you feel so isolated.
I am so thankful I found this group, though; everyone has been nothing but supportive and helpful, especially when it is most needed.
I just wanted to take a second to write this post and be grateful, there really is light in the midst of the darkness of this disease."
-Esther L., Living with Fibromyalgia
If you would like to submit your own great experience with Ben's Friends, please email them to: Your comments might even appear in the newsletter!

Your Feedback
We made some additions to the newsletter, and we're still making improvements.
Is there anything specifically that you like, dislike, or is there a specific topic that you would like covered in an upcoming newsletter? If so, please email us your feedback at

Ben’s Friends Team

Interesting read. THANKS!!