March 2013 Community Newsletter

Dear Living With Eagle Family and Friends,

I have been going through the many responses to the discussion “Lessons in Life” posted in all our 34 communities. The responses I got inspire me so much!

One comment sums it all in a word: Perspective.

Isn’t it true? Having illnesses, though certainly not enjoyable, help us view things around us differently, even begin to appreciate matters that bear no significance to us before. Kind of like “stumbling upon it”, as psychologist Dan Gilbert describes how our “psychological immune system” lets us find our new normal when things don’t go as planned.

What can help us develop this mindset of happiness? On this note, I’d like to share with you some more of my recent reads, on happiness even in spite of illnesses. I promise this won’t be very long.

Be in the company of happy people—Given the choice, would you choose to be miserable? Hardly! So surround yourself with people who are determined not to be miserable. A Framingham Heart Study credits social networks for cascading an emotional contagion, especially those that allow person-to-person interaction. Yes, happiness is contagious, but of more important note is that the same study finds sadness is not nearly as “infectious” as happiness. Interesting, isn’t it?

Be occupied—Another study points to the sense of accomplishment as a source of being happy—kind of like an investment. Our volunteer moderators, for example, dedicate more of their time and resources—even mastering a skill or ability—which may bring more stress in the moment, but over time they report a greater happiness and satisfaction in having finished a task or learned something new.

Smile, sincerely—Do you find yourself smiling as you talk to someone over the phone, even when you know the person on the other line does not see it? Apparently, an outward expression intensifies an inner feeling. Smile, even if you just have to, but more so if you feel it coming.

Stop trying, just be—Do not pursue happiness the way you pursue a goal. Why? Yale psychologist June Gruber explains that pursuing happiness can actually lead to negative outcomes "when you’re doing it with the motivation or expectation that these things ought to make you happy” instead of simply being immersed in the process.

So stop trying to focus on becoming happier and just be. Surround yourself with people, not to become happy, but to enjoy their company. Keep busy to enjoy the process of becoming happy. And keep smiling, not because you want to be happy, but because you are. Sincerely.

IN THIS ISSUE


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Welcome New Members

BEN'S FRIENDS HIGHLIGHTS OF THE MONTH

BF Recognized by Harvard Business Review

BF Launches Nephrotic Syndrome Support Community

BF Reaches New Members Milestone!

Feature: Ben’s Friends YouTube Channel

LWE COMMUNITY HIGHLIGHTS

Featured Content

Featured Member

Picture of the Month

Community Stats

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Welcome New Members

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“Rare Disease Day – Rare Disorder Without Borders”—what a way to celebrate the many colors of Rare Disease Day last February 28, 2013! The event was observed in over 70 countries and lands across the globe, raising awareness and commitment from patients and stakeholders alike. We are glad you joined us now, at a time when awareness and hopes are high for those of us with rare conditions.

Our 30+ patient communities are home to a multinational family of over 28,000+ members that share caring and support in an outstanding way!

So why not reach out by telling us more about yourself — you’ll feel the sense of community and support as fellow members respond to your Blogs and Discussions. Shy? You’re not the first to feel that way: we completely understand. Start your way by reading through other’s write-ups and the comment threads. These will surely inspire you!

Others find sharing quotations, pictures and videos less of a burden but draws more interest. Feel free to post some using the Media tab.

Joining a smaller may be more manageable for you. Check out the Groups tab to find your interests, or create your own group if there is none.

Again, welcome to Ben’s Friends—your second home!

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BEN'S FRIENDS HIGHLIGHTS OF THE MONTH

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BF Recognized by Harvard Business Review

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Read co-founder Scott Orn’s article Deliver Big Impact on a Small Budgetdescribing Ben’s Friends rise as a major advocate for rare disease patients on Harvard Business Review. Leave a comment on how your life took a turn for the better by joining your community.

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BF Launches Nephrotic Syndrome Support Community

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As millions of people suffer from kidney diseases, including nephrotic syndrome, more patients begin to realize the value of exchanging notes and sharing solutions. Our new Nephrotic Syndrome Support site allows for such patient-to-patient interaction. Click on this link to read about the launch of Nephrotic Syndrome Support site on CNN.com.

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BF Reaches New Members Milestone!

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The number of members across Ben’s Friends communities surpassed the 28,000 mark as February drew to a close, an outstanding increase of over a thousand over last month. Nine of our communities have over 1,000+ signed up members, the highest of which is AVMSupposrt which has 5,200+ members.

Our sites were also visited over 140,000 times in February, of which 74,000+ were by unique visitors.

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Feature: Ben’s Friends YouTube Channel

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Have you seen Ben’s Friends videos on YouTube lately? Check out the latest videos and subscribe here.

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LWE COMMUNITY HIGHLIGHTS

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Featured Content: So Confused

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Remember when Eagle Syndrome was new to you? Cindy Lee is on that stage and is waiting for your input on her discussion post. Check it out!

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Featured Member: CheekyChops

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Cheekchops of Oxon, UK is not giving up on finding a doctor to define her symptoms. Welcome her to the community!

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Picture of the Month

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BigsBug shares a magnificent view of Roosevelt Lake and a few more in her album. Go check it out!

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Community Stats:

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Number of Members as of March 1, 2013 : 314

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