Dear Friends and Family of CMT,
Recently I started a discussion on What’s the best thing you’ve done for yourself lately?
I am interested. Really. Not a ‘curious’ sense of interest. Everyone has a peculiar sense of feeling good which is unique from everyone else. My question is based on a sincere interest in knowing if anyone have really focused on one’s own happiness, of feeling good.
We can all get so immersed in the “busy-ness” of our lives—trips to the hospital, the frantic searches for cure, even preparing dinner for coming well-wishers. And these are aside from our usual daily grinds. But have we done something for ourselves lately? A me-time, be it ever so brief?
And there is a reason I ask: because at the end of the day it is our own feeling of happiness that counts, isn’t it? No, it is not being selfish at all. Neither is it being naive to the reality of our conditions.
It has something to do with maintaining emotional health by keeping a positive spirit, managing stress and rediscovering happiness.
Putting it into words even exponentially increases the feel-good effect—a subconscious reminder that we may have rare diseases, but that is NOT all that we have!
IN THIS ISSUE
BEN'S FRIENDS HIGHLIGHTS OF THE MONTH
BF Joins Rare Disease Day 2013
LwA’s Alan Thomas Featured by Movement for Hope
CMT COMMUNITY HIGHLIGHTS
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Welcome New Members
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Ben’s Friends welcomes you to our family of patient communities. Like the 27,000+ members who are already in our 30+ sites, YOU will be glad to learn that you are not alone, that there are people who understand exactly what you are going through, and that they are willing to go out of their way to offer you their support.
But we are counting on you too. Inspire us with your story by sharing on your personal Blog page. Do you have a question to ask, something you need to verify about your condition? Posting it on the Discussion page will do the trick. Share pictures through the Media tab. It will help us see you in context.
Make yourself at home. After all, it is yours!
BEN'S FRIENDS HIGHLIGHTS OF THE MONTH
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BF Hits 27,000+ Members!
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Ben’s Friends reached 27,000+ members in January!The sites grew 25%+ overall in January. Amazing for one month!
Other thrilling news includes 84,000+ unique visitors to communities, 600,000+ page views, 5,000+ Twitter followers and around 19,000 Facebook followers. What a great way to start 2013!
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BF Fundraiser Draws $13,000+!
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Thanks to everyone who helped us raise more that $13,000 in our Indiegogo campaign. Every dollar raised goes to building the community as we take no salaries and your wonderful Moderators volunteer their time!
Indiegogo even recognized BF in their People Doing Good Roundup!
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BF Joins Rare Disease Day 2013
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February 28, 2013 is Rare Disease Day and as in previous years, Ben’s Friends will be participating in the activities. There are over 6,000 types of rare diseases affecting millions globally. Let us all be a part of raising awareness by sharing this link to the official Rare Disease Day video.
You will also notice a Facebook-like timeline at the end of this newsletter. We would love to see you use this picture on your FB on Rare Disease Day 2013 as a way of being one with the rest of the community on this occasion.
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LwA’s Alan Thomas Featured by Movement for Hope
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Movement for Hope featured the works of Alan Thomas of our Living with Ataxia community in raising awareness on the condition. Check this out!
CMT COMMUNITY HIGHLIGHTS
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Featured Content: Stary Night Art de Cure raises funds for CMT research!
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Kudos to Melinda L for sharing photos and highlights of the Starry Night Art de Cure Fundraiser Exhibit for CMT Research! It was as good being there ourselves. Check it out!
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Featured Member: LAFF11
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LAF11's 6-year old son is showing motility, balance, and motor issues. Suffering from CMTX, LAF11 presumes his son might be having CMT, type yet unknown. Now he feels like starting from scratch, and is currently seeking for new information and modern treatment available. Visit his page today and share your story.
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Picture of the Month:Ben's Friends Salute to Rare Disease - Nobody should suffer alone.
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Community Stats:
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Number of Members as of February 1,2013 : 162
As you face individual challenges, do not forget to do something for yourselves. Give yourself a break. You deserve some of that pampering. Make it a regular habit!
But remember to be gentle too.
Ben