The CSRF Launches Facebook Fan Page
By Elissa Kline

Facebook (www.facebook.com) is a global social networking website where users can add friends and update their personal profiles to notify friends about themselves. It currently has about 350 million active users. Having a profile on Facebook is a great way to stay in touch with friends and family, and even a way to catch-up with long lost classmates and coworkers. And it’s not just for teenagers; people of all ages use Facebook to communicate with their friends and families.
Individuals or companies can create "Pages" which allow users to "become a fan" of an individual, product, service, or concept. Pages look and behave much like a user's personal private profile, but were developed as a means for companies and organizations to update and inform interested parties. Other organizations that you might be interested in following on Facebook include: the American Diabetes Association: www.facebook.com/AmericanDiabetesAssociation  or the American Heart Association.

CSRF recently launched our own Facebook page and will soon be using it to help keep in touch with our members in real-time. Facebook will be a resource where you can find the most up-to-date information on drug trials, news, events, and other projects we are working on. Don’t worry: you don’t need to join Facebook to stay informed. As always our website will continue to be the best way to connect with us and our newsletter will continue to be delivered to your mailbox on a regular basis. Facebook will be yet another touch-point where you can interact with CSRF and find support and information. You can find a link to our Facebook page on the homepage of www.csrf.net or just search for Cushing’s Support & Research Foundation in the Facebook search field – if you see our logo, you’ve found us on Facebook!

If you aren’t already on Facebook, it’s easy to get started. All you need an email address. Just go to the homepage (www.facebook.com) and fill out the registration information. It is completely free to join and you won’t be spammed. Once you join, the first thing you will want to do is find your friends and family. Facebook will help you find them by searching your email contacts. You can also search for people by typing their name in the search box on the upper right-hand side of the page. You can customize your profile by adding a picture, and completing the form about your interests, favorite things, education and work. You can fill out as much or as little information as you want. You can also set up privacy settings to ensure that only the people that you want to see you information can see your information. Once you have everything set up, your friends will be able to leave messages on your wall for everyone to see and you can leave messages for them as well. You can also upload pictures and videos to share with your connections – you can even tag pictures of friends! Finally, you can also send private messages. Remember with Facebook, you can share as much or as little as you want.

You can easily use Facebook to stay up-to-date with your friends and even RSVP for events. Every time you log onto the site, you will see a newsfeed. In the newsfeed, you will find a listing of all the updates from your friends. If you have become a fan of the CSRF Facebook page, you will also see updates from CSRF in your newsfeed. And what about those events? If your friend plans a party and invites you using Facebook, you will receive a notice and can sign-in to the site to RSVP and get information like directions. As you become more comfortable with Facebook, you’ll find more and more advanced features. For example, are you always forgetting your friends’ birthdays? Facebook will show you a list of all the upcoming birthdays for your connections. The key is that Facebook is easy to use and can help you stay in touch.

Two major objectives of the CSRF are to put patients in contact with other patients and to facilitate the sharing of information between members. Facebook is a great way to connect with other Cushing’s patients and families. Keeping up communication is generally hard, particularly when you are coping with Cushing Disease, but once you’ve made a connection with someone on Facebook, the obstacles to maintaining communication will be eliminated. We hope that you’ll find us on Facebook and that you will form longstanding, mutually beneficial friendships with other members that you can maintain on Facebook as well.
An Update on CSRF Activities

 In May 2009, the CSRF exhibited at the American Association of Clinical Endocrinologists (AACE) in Houston, Texas. This conference was attended by 1,100 clinical endocrinologists, most of whom had several Cushing’s patients.

Also in May, Ellen and Jackie, both from the Seattle area, exhibited at the Seattle Diabetes Expo (www.diabetes.org - Community Programs) which is an event held for diabetic patients at a variety of locations across the country. Ellen and Jackie also represented the CSRF at the Cushing’s Day at Swedish Neuroscience Institute, also in Seattle. This event was a 2-part meeting, with patients attending one session and physicians attending a separate session.

In September, the CSRF will be exhibiting at the Lawson Wilkens Pediatric Endocrine Society in New York City, which is also an international event this year. Approximately 3,000 pediatric endocrinologists and nurses are expected to attend. This is the first year that the CSRF will exhibit at this event.

The CSRF will also be exhibiting at the annual Clinical Endocrinology Update in October, in Atlanta, GA. In the past, this has been an excellent event.

Through the Paula Rosina Santoro Foundation, we have raised more than $70,000 over the past six years to fund the activities of CSRF. This year alone, we raised more than $10,000. It's been exciting and rewarding, but the premise of the fundraiser, "Bike and Hike with Mike" has run its natural course, especially with Mike on course for college.

We ask others in CSRF to consider doing their own fundraisers to help Cushing's disease patients and to provide more money for research. While Paula and Michael's unique story drew the attention of the media, the fact is that most of the people who contributed year after year to the "Bike and Hike" weren't attracted by the media stories but were, rather, friends, relatives and neighbors who knew us and the twins. Most of the money was raised in small amounts-under $50, typically-and people seemed to appreciate that the fundraiser was held every other year (which also made planning easier for us).

There's a lot of good fundraising advice on the internet or available through local libraries. Here are just a few ideas. Keep an eye out in your local newspaper for opportunities to fundraise. Go bowling for dollars, miniature golfing, have a bake sale, garage sale, a volley ball game. Check out your local sports teams, theaters, movies, museums and work with them and fundraise. We just participated in the local mall's special event, selling tickets to an exclusive evening of shopping during the upcoming holiday season.

Take the plunge and try a CSRF fundraiser! All you need to do is ask, people's generosity will do the rest. You'll be surprised how many of your friends and relatives want to help, and understand the importance of teaching people more about Cushing's and its consequences.

John Santoro and Pam Bennett-Santoro
Paula and Michael's parents

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