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Lyme Disease Support Network

January 2013 Community Newsletter


#1

Dear Friends and Family of LDSN,

Let me start by thanking you for your wonderful participation in our 2012 campaign and to warmly welcome you to our next adventure!

Some of you may be asking: “What is Ben’s Friends? How is it related to this community?”

Ben’s Friends is a team of dedicated professionals, mostly patients and affected by rare diseases too, who are tasked with building, keeping up, and growing your community and 30+ other rare disease communities.

You can liken Ben’s Friends to a construction company with carpenters, electricians, plumbers masons and labors, although in this company, most workers are volunteers who will most likely live in the house we build too.
On the other hand, you can liken your community to the houses that we build.

Now, the carpenter may say about his job “Well, I cut wood according to size and nail these together” because that is what he actually does, maybe from morning to late afternoon and for days on end.

When asked what he does, the electrician may answer: “I lay cables, connect switches and bulbs” and still, technically, be correct.

The same can be said of the plumber, the mason (“I lay bricks”) or the labor. And, of course they’re right! Absolutely! ‘coz that’s what they really do. And they know their job very well, no doubt.

But who of them will say: “We build HOMES!” “We provide SHELTER from the elements!” “We build NESTS where families grow!”

Purpose. That’s what is clear to us here at Ben’s Friends. The purpose of what we do. We build communities that become HOME, SHELTER and NESTS for those of us who suffer from our unique conditions.

Some of you may have been a part of the building process, as in the founders of the groups. Some with the upkeep and growth, as in the moderators and active members. But what binds us is that we are all in this together and benefit from the wonderful homes we have built together.

And just like in every home, the most important element in it is not the wood or the bricks that went up to become a wall, nor the wires where electricity flow and plumbing where water comes through. The most important element of a home is the FAMILY which lives in it.

That is our mindset here at Ben’s Friends: YOU, the communities we build, take precedence over us.

It has always been our mindset since we first built our first home, AVMSurvivors.org, in 2006 and every subsequent site—including yours. While most of us are volunteers, we have also hired paid services from time to time but we try to keep it a minimum. We had to, otherwise we wouldn’t have been successful in putting up appealing and efficient websites.

That’s why we have to do fundraisers to ensure that our planned new sites are funded accordingly, After all, websites do not come free.

We do this, while offering you the assurance: Your contribution, every cent of it, will be well spent for the building of new homes for patients of other rare diseases, sot that they will enjoy the same warmth, safety and support as you did on this site.

IN THIS ISSUE


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Welcome New Members

BEN'S FRIENDS HIGHLIGHTS OF THE MONTH

BF Fundraiser on Indiegogo

BF Posts 2012 Performance Milestones

BF’s John Stamler Features in Cleveland Cinic’s E-zine

LDSN COMMUNITY HIGHLIGHTS

Featured Content

Featured Member

Picture of the Month

Community Stats

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Welcome New Members

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We are glad to have you here with us! We guarantee you will find our family to be just as you expect a real one must be.

Help us get to know you better by sharing as much about yourself as propriety allows. Blogs are a great way of letting us know how you feel, and by throwing out what’s on your mind in the Discussion page, we can exchange views and our researches which may become valuable resources for all of us.

Check out our Media tab where you can post pictures and videos of interest, even your personal ones.

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BEN'S FRIENDS HIGHLIGHTS OF THE MONTH

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BF Fundraiser on Indiegogo

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Thanks for your voluntary contributions! Without it, Ben’s Friends does not exist. Please help with a contribution, if you can, and spread the word by sharing this link to your friends and your network.

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BF Posts 2012 Performance Milestones

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Last year was a big leap forward! New websites, members and site features helped Ben’s Friends Patient Communities leave a mark as one of the top online advocates for rare disease patients. See a review of our 2012 performance in this press release

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BF's John Stamler Features in Cleveland Clinic's E-zine

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As Cleveland Clinic celebrates the Heart Health Month this January, our very own Ben’s Friends Partner and Atrial Septal Defect Support and Living with VWD Community Moderator John Stamler was featured on Health Hub Magazine on this article “Running a Marathon After Heart Surgery”.

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LDSN COMMUNITY HIGHLIGHTS

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Featured Content: Putting out the fire called Inflammation = Pain

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Moderator Jen shared this informative post on inflammation which, thanks to Google listings, served as an invitation to many Lyme Diseases sufferers to the site.

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Featured Member: Jen

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From Washington DC, Jen helps moderate our Lyme Disease network, which she helped found, sharing with everyone her morale booster: Don't give up! Keep up the good fight in finding the root cause of your pain!

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Picture of the Month

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Jeremiah can shoot! as can be seen in this B&W picture of two hands clasped together, one of a hospital patient and the other offering support!

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Community Stats:

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Number of Members as of January 1, 2013 : 29

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Each time I take a look at how we have grown over the years, it brings so much joy in my heart that through our humble effort, many have now found a home and a family who understands where previously there was none. We hope to be able to help more this year, and I extend my hand to invite you on this worthwhile endeavor.

Ben