CSRF Website Updated
Per the article in the last newsletter, thanks to generous funding from Novartis Oncology, the CSRF has been able to make some exciting improvements to our website! The new site has been moved to www.CSRF.net. Thank you to all of you that provided feedback on the new site by taking the survey on the homepage. We have tried to implement your suggestions and will continue to do so as we receive them. You can now leave a comment from any page on the website. We had a number of comments that the new search features made information much easier to find. If you haven’t already done so, please take a look at www.CSRF.net and provide your feedback.
We anticipate that by the time you receive this newsletter, you will already have received an email that the new Members Services area of our website is operational. Yes, it has taken a lot longer than expected, for which we apologize! If you are a patient, or parent of a pediatric patient AND we have a valid email address for you AND we have had some communication with you in the not so distant past, AND you have not indicated that you do not wish to receive email from the CSRF, you should have received an email asking you to log in to the secure, password protected Member Services area to change your password and Update Your Profile. This email came from cushinfo@csrf.net and was titled CSRF Member Services Now Available. If you do not have a current email address on file with the CSRF, or did not receive this email, please send an email to mailto:cushinfo@csrf.net!
Newsletter Survey Results
Following the mailing of the Spring, 2008 newsletter, the CSRF emailed a survey to those members with email addresses. Thank you to all of you that responded! We wanted to provide you with some results. Overall, 90% of you gave the CSRF newsletter the highest rating of “very good”, with no one indicating that it was poor. 83% found the information included in the newsletter to be “very useful”, with no one saying it was “not useful”. 60% of you requested more Doctor’s Answers, 41% more articles on Coping, and 38% more patient stories. The questions that we ask a doctor come primarily from emails that we receive. To expand this section, we need your questions! So, if you have questions for our doctor’s, please email them to cushinfo@csrf.net or mail them to the Boston address. 95% of you thought the doctor’s articles were written at a level that was understandable, 79% of you thought the grammar very good, 56% of you thought the newsletter has an “appealing” look, but 8% thought the newsletter “needs a new look”. There were a number of comments made that deserved an individual response. However, this survey was anonymous, so unless you left your name, we have no way of responding to you! You can always send an email to cushinfo@csrf.net to offer suggestions and comments. There was one excellent suggestion of a type of question and answer involving patients and doctors, that we may try to do for the next newsletter, either through the Member Services section of our website or by email. Thank you for your comments!
The Joy of Fundraising
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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We Still Need Your Stories!!
You can email them directly to Laura, our Patient Stories editor, at:
lboyd678@verizon.net, or to cushinfo@CSRF.net.
We Need More Members to Contact
Listed on Our Website!!
We continue to need members willing to post at least their emails under Patients to Contact on our web site. Experience has shown, that this doesn't translate into more junk email. We'd like to have someone listed in every state. If you're willing to have your information posted, please email cushinfo@CSRF.net or update your Member Profile! | |
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