Dear SynovialSarcomaSurvivors Family and Friends,
Celebrating Awareness Months for specific rare diseases are a great way of procuring attention to our cause. By discussing our condition and helping to educate others, our active participation creates a great impact.
So, we are sharing these suggestions anew on how to help spread the word.
ON SOCIAL MEDIA AND THE INTERNET
- Post links to your support community on your Facebook, Twitter, and other social networks with a brief note
- Contact online journalists who write your favorite blogs. You can give them something to write about. :)
- Share a picture or infographic on the rare disease. Drawings are fine as well.
- Make homemade videos or slide programs and post them online.
ELSEWHERE
- Wear bracelets, T-shirts and sweaters of the rare disease color.
- Contact newspapers and media to tell your rare disease story.
- Start a mini-fundraiser featuring crafts and novelties that feature your rare disease.
- Make presentations at local events, schools, libraries and community meetings.
--------------------------------------------------------------------------------------------------
IN THIS ISSUE
--------------------------------------------------------------------------------------------------
SynovialSarcomaSurvivors COMMUNITY HIGHLIGHTS
BEN'S FRIENDS HIGHLIGHTS OF THE MONTH
Thank You Videos on Indiegogo Fundraiser
Ben Munoz Featured by Houston Chronicle
Ben’s Friends Patient Survey Reported on Psychology Today
--------------------------------------------------------------------------------------------------
Welcome New Members
--------------------------------------------------------------------------------------------------
Joining this community is one of the best decisions you have made since being confronted with this rare condition. Now you have the power of a whole community behind you!
Make your presence felt. Share your story on the blog page. Throw in what’s bugging you on the Discussion/Forum page and discover what has endeared this community to many others like you. You can post pictures and videos on the Media page as well and share your location on the Member map. It does help everyone to see you in context and get to know you better.
Subscribe to the BF Newsletter by ticking that box on your profile information. Don’t worry, we will not clutter your mailbox with useless ads and information.
Our FAQs on Privacy found at our menu tab section will add to your peace of mind and brief you on the measures we take to provide a fun and secure place for everyone. Check it out every now and then.
SynovialSarcomaSurvivors COMMUNITY HIGHLIGHTS
--------------------------------------------------------------------------------------------------
Featured Content: Immune-based Therapies
--------------------------------------------------------------------------------------------------
Any experience with immune-based therapies? Read about this treatment which member Gavin of Torrance, CA is looking into.
--------------------------------------------------------------------------------------------------
Featured Member: Irish Shiela
--------------------------------------------------------------------------------------------------
Colin is very fortunate to have Irish Shiela by his side.Check out the sweet profile picture she chose on her wall! This loving wife from Cavan, Ireland is our feature member.
--------------------------------------------------------------------------------------------------
Picture of the Month
--------------------------------------------------------------------------------------------------
Check out multi-community moderator Tracy Z's reminder to everyone!
------------------------------------------------------------------
--------------------------------------------------------------------------------------------------
Community Stat:
--------------------------------------------------------------------------------------------------
Number of Members as of May 1, 2013 : 407
BEN'S FRIENDS HIGHLIGHTS OF THE MONTH
--------------------------------------------------------------------------------------------------
Thank You Videos on Indiegogo Fundraiser
--------------------------------------------------------------------------------------------------
Check out these ‘Thank you!’ videos from Nikki C and Lisanne in our latest fundraising event on Indiegogo. Helps spread the word out by sharing this link on your social network and friends.
--------------------------------------------------------------------------------------------------
Ben Munoz Featured by Houston Chronicle
--------------------------------------------------------------------------------------------------
Kudos to Ben’s Friends founder Ben Munoz as his story is featured by Houston's online newspaper, the Chron! Highlighted in the article “Med student starts website for patients with rare diseases” written by Claudia Feldman is Ben's current activities as a first year medical student from Baylor College of Medicine in Houston and his personal experience after suffering a stroke in 2006, leading to the founding of Ben’s Friends the following year. Read more on this link.
--------------------------------------------------------------------------------------------------
Ben’s Friends Patient Survey Reported on Psychology Today
--------------------------------------------------------------------------------------------------
'Ben’s Friends’ survey of patients referred by medical doctors to psychiatrists and psychologists is the subject of Dr. Allen Frances’ blog, “Saving Normal” on Psychology Today. The survey underscores recent developments in the public controversy over so-called “somatic” disorders and is featured in his recent blog entry Patients Are Making A Difference — proof that our voices are being heard!
Lastly, our heart goes to the people in Oklahoma are still smarting from the level 4 tornado which ravaged several towns on Monday, May 20th. We also hope that none of our members have been affected in any way by the mammoth twister.
Your Ben's Friends Family