Community Newsletter

Dear Synovial Sarcoma Family and Friends,

We're very happy to announce that we were just approved as an official nonprofit by the IRS!!
This means that we are eligible for corporate and foundation grants to help pay for all the new communities that we've been waiting to launch! Our first community in 2014 will be for Addison's Disease.
Our patients and moderators can also look forward to many more behind-the-scenes improvements. Stay tuned.

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IN THIS ISSUE

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SYNOVIAL SARCOMA COMMUNITY HIGHLIGHTS

Welcome New Members

Featured Content

Featured Member

Picture of the Month

Community Stat

BEN'S FRIENDS HIGHLIGHTS OF THE MONTH

Ben's Friends Now a Non-Profit 501 (c)(3) Organization

Ben's Friends Joins World in Celebrating Rare Disease Day on February 28!

Ben's Friends as Official Charity of the Cleveland Marathon

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Welcome New Members

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We are glad you found us! You may have noticed how warmly you were welcomed by the community and have benefited from the wealth of information on this site. No other online SYNOVIAL SARCOMA community offers the same!

You may want to get more out of your FREE membership. Here are a few tips on doing that.

1. If you have a question related to SYNOVIAL SARCOMA, the best way to get answers is to initiate a discussion on the Forum page. It’s the quickest way to get everyone’s attention.

2. You may prefer to use the Search tab on the top right corner of our community page. Type in the keyword to your query and click enter. This will lead you to previous content on the subject, if any.

3. Post your story on the Blog page and share it on your social network.

4. Add some inspiration and feature your Success Stories and share it among your circle as well.

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SYNOVIAL SARCOMA COMMUNITY HIGHLIGHTS

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Featured Content: 23 with synovial sarcoma

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In this discussion post, Bobby thoughtfully shares how it is like to have SS at a young age of 23.

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Featured Member: Ellen

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Now's the time Ellen needs our support most, after losing her beloved son to SS in July 25th--just 6 days after getting married.

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Picture of the Month

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Check out Mr. Smirks' " I Can" campaign poster--courtesy of Jefferson Hospital.!

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Community Stat:

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Number of Members as of February 1, 2013 : 472

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BEN'S FRIENDS HIGHLIGHTS OF THE MONTH

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Ben's Friends Now a Non-Profit 501 (c)(3) Organization

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Ben’s Friends is pleased to announce it has officially been approved by the IRS as a 501(c)(3) (we've had non-profit status for a while)!

This enables all donations to be tax deductible (starting with any made from July 2013 on), makes us eligible for corporate donations and matching gifts, and gives us access to grants and foundations (dramatically widening our donor pool), and provides benefits reserved for nonprofits (such as Google ads credits). This status will help us realize our ultimate goal - to ensure everyone affected by a rare disease has a safe place to go (our communities!) to connect with someone like them.

Thank you, Members and Moderators, for hanging in there with us and never wavering as we went through this process. Now the real work can begin!

If anyone has any ties to grants, foundations, or partners who can help 501(c)(3) organizations, or if you have any past experience writing grant applications, please email us at ■■■■■■■■■■■■■■■■■■■■■■■■

Ben’s Friends is pleased to announce it has officially been approved by the IRS as a 501(c)(3) (we've had non-profit status for a while)!

This enables all donations to be tax deductible (starting with any made from July 2013 on), makes us eligible for corporate donations and matching gifts, and gives us access to grants and foundations (dramatically widening our donor pool), and provides benefits reserved for nonprofits (such as Google ads credits). This status will help us realize our ultimate goal - to ensure everyone affected by a rare disease has a safe place to go (our communities!) to connect with someone like them.

Thank you, Members and Moderators, for hanging in there with us and never wavering as we went through this process. Now the real work can begin!

If anyone has any ties to grants, foundations, or partners who can help 501(c)(3) organizations, or if you have any past experience writing grant applications, please email us at ■■■■■■■■■■■■■■■■■■■■■■■■

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Ben's Friends Joins World in Celebrating Rare Disease Day on February 28!

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Celebrate Rare Disease Day with us on February 28 by sharing our Ben’s Friends Flyer with your friends, giving out our e-book as a gift to someone affected by rare disease, and more!

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Ben's Friends as Official Charity of the Cleveland Marathon

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BensFriends.org is now an official charity of the Cleveland Marathon, to be held on May 18, 2014. If you or anybody you know wants to participate in any of the races (marathon, half marathon, 10k, 5k and kid's run) over that weekend, please e-mail us at ■■■■■■■■■■■■■■■■■■■■. This is our first charity slot at one of these races and we hope to be a part of many more across the world to raise awareness for folks with Rare Diseases.

John Stamler, Ben’s Friends Executive Director, will be running at the Cleveland Marathon for BensFriends.org to raise money and awareness about the organization and rare diseases in general. His participation in the race comes exactly four years since his successful open heart surgery at Cleveland Clinic to correct an Atrial Septal Defect, a congenital disease better known as having a hole in the heart.

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