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Lyme Disease Support Network

April 2013 Community Newsletter


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Dear Lyme Disease Support Network Family and Friends,

Our prayers go to those affected by the Boston Marathon bombing. We also hope that none of our members were directly affected by it in any way.

Those who have listened to Scott’s interview on Thoughbot would have realized by now how important your personal participation and activity in our site is. This is a site built for you: it is yours.

It kind of reminds me of that story of a house builder. I’m sure some of you have heard of it but here it goes.

An old carpenter worked for a contractor for most of his life. The contractor loved his work so much that he has practically kept him and taken care of him during the whole time.

One day the carpenter finally decided to call it quits and so he told the contractor.

The contractor said okay, but requested him to stay on for just one more house to build just before hanging his tools and retiring with his ageing wife. The carpenter thought, one more house wouldn’t hurt. So he agreed.

But his heart wasn’t with the job unlike before. He used second-class materials, his workmanship was not there. The finished house simply could not stand up in comparison with the quality of his previous works. After all, he thought, I’m already retiring.

When he told the contractor it’s done, the boss asked to meet him at the house along with his wife. There, the contractor handed him the keys to the house and said, “this is your house: it’s my gift to you for your long-time service.”

How do you think would the carpenter have felt? Could he have done it differently had he known the house was his?

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IN THIS ISSUE

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Welcome New Members

BEN'S FRIENDS HIGHLIGHTS OF THE MONTH

Ben’s Friends Featured in Eli Lilly

Baylor College of Medicine Spotlight on Ben Munoz

Scott Orn Talks About Ben’s Friends in Thoughtbot Podcast

Introducing SafeImage

LSDN COMMUNITY HIGHLIGHTS

Featured Content

Featured Member

Picture of the Month

Community Stat

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Welcome New Members

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Almost a year ago we conducted a survey on What do you like most about our community?. From those who responded:

  • 72% said they appreciate the People and Connection (support, understanding and connectivity);
  • 38% say it’s the helpful Information and Site Content they get from the sites; and
  • members also mentioned Site/Technical Features such as website design, “ease of access” and “navigation”, the “24-hour” availability and the “layout” of the site

We have made a lot of improvements since then. You are fortunate to have come at a time when the "house’ is already built and “habitable”. Now, it’s up to you to enjoy connecting with your new family, adding to the wealth of information in the sites and familiarizing yourself with the community features. Here’s how:

1. Tell us more about yourself. Share your story on the Blog area or post a picture or video through the Media tab.

2. Explore more of the site. Use the quick Search tab for your queries and participate in the Discussions forum. Find out what each tab holds for you.

3. Connect through mobile. Yes, you can receive updates and chat using the mobile feature of your site. Just type the site URL on your browser, add /m at the end, press Enter and you are ready to go.

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BEN'S FRIENDS HIGHLIGHTS OF THE MONTH

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Ben’s Friends Featured in Eli Lilly

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Eli Lilly, one of the largest phamaceutical companies, featured Ben’s Friends on its corporate blog, The Power of Community. Check out the article and share how joining BF has benefited you in the comment thread.

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Baylor College of Medicine Spotlight on Ben Munoz

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The BCM Momentum, Baylor College of Medicine’s online journal, featured BF founder Ben Munoz and Ben’s Friends’ efforts in providing online communities for rare disease patients worldwide. Check out the article Coping Through Connection: Rare Disease Support Communities and comment how much you value the connection you get through BF.

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Scott Orn Talks About Ben’s Friends in Thoughtbot Podcast

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Scott Orn was on the ThoughtBot podcast talking about Ben’s Friends including how it started after Ben’s AVM and how the 150+ volunteer moderators keep the support, info and good vibes flowing despite overcoming their own health challenges.

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Introducing SafeImage

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Long time Ben’s Friends supporter, Mark Frank, has developed SafeImage, a new free service that allows patients to securely upload medical images (CT scans,MRI, digital X-rays, etc.) and access these any time, from anywhere in the world. Members of Ben’s Friends communities can sign up for free by clicking here and creating an account.

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LSDN COMMUNITY HIGHLIGHTS

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Featured Content: Infographic on Rare Diseases

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Check out this easy to understand, single-page Infographic on Rare Diseases culled by Armando from EURORDIS' Rare Disease Awareness Day campaign.

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Featured Member: LymeMomma

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Isn't it just terrible when your 8 year-old son is found to have Lyme disease? Reassurre LymeMomma that she is not alone in her battle for her son.

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Picture of the Month

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Heads up for Lyme Disease Awareness Month in May!

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Community Stat:

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Number of Members as of April 1, 2013 : 56