The CSRF depends on your financial support!
- The CSRF is a 100% volunteer organization, thus has minimal administration costs.
100% of your of your donation goes to programs such as newsletters, maintenance and improvement of our website and exhibition at select conferences to gather the latest medical information and educate attending medical professionals.
The CSRF does work diligently to file for grants to cover our expenses. However, some programs cannot be covered by grants, thus requires use of our own funding.
We also work diligently to ensure that your dollars are well spent.
CSRF and 2017
If you looked at the financial report for 2015, you probably noted that we have minimal administrative costs with no paid staff or office space. Membership dues account for a low percentage of CSRF income; so this year, we encourage every member to pay the modest $30 yearly membership fee. We don’t turn anyone away for non-payment, but we value your continued support. Sometimes, members leave us for the best possible reason — their Cushing’s has been successfully treated, and they are moving on with their lives! Of course, we would love to hear that from everyone, but we also ask you to remember what it was like when you first learned about Cushing’s, and how much you needed reliable information and support. Your continued membership enables us to be there for current and future patients.
The CSRF Board is excited about 2017! We are forming several committees to accomplish our goals, with more members involved, and projects to increase public awareness. Our success depends on members’ willingness to volunteer, and having funding available.
Our Achievements in 2016
- We exhibited again at the annual Endo and Clinical Endocrinology Update meetings. For the first time, the CSRF had a table at the European Congress of Endocrinology, graciously staffed by a German group, Netzwerk Hypophysen- und Nebennierenerkrankungen e. V. In 2017 we will expand these plans to include a table at the Pituitary Congress meeting.
- The CSRF consolidated the Cushing’s Patient Pamphlets into one section of our website (under Resources or Quick Links on our homepage). We are adding pamphlets explaining replacement medications needed post successful surgery, managing replacement doses during illness, and Quality of Life after treatment. We need funds to make this information available to medical professionals in multiple copies and in several languages.
- The CSRF continues to publish three newsletters per year that contain articles on the latest medical information, your general questions answered by experienced physicians, and the ever popular Patient Stories section that serves to encourage others. In recent years, the newsletters have generally run over 20 pages per issue. The newsletters are also distributed to many physicians in multiple copies for use in their offices which is one of the ways new Cushing’s patients find the CSRF.
- We assisted a medical researcher via a survey on support programs to benefit Cushing’s patients. The results are currently being submitted for publication. During 2017, we anticipate cooperating with researchers on other surveys and partially funding one survey. We firmly believe that patient-based information available in the medical literature contributes to physician education and better patient care.
- We hosted a webinar on the Diagnosis of Cushing’s, presented by Dr. James Findling, and plan to host a spring webinar in 2017 on a topic chosen from the results of our member survey. There are also plans for a Cushing’s Patient Education Day in Fall of 2017.
Spring, 2017 Update
The CSRF would like to thank all of you who made donations and paid membership dues for 2017. Our Treasurer, Ellen, is busy working on our 2016 Financial Report which will appear in our next newsletter. For more information on what your donations support, please see the DONATE page of our website which has links to the 2015 Financial Report as well as how your donations are used.
While we actively solicit payment of membership dues and donations once a year, we would like to remind you that we accept donations all year long! We would also like to emphasize that we have minimal administrative costs with no paid staff or office space. Membership dues account for a low percentage of CSRF income; we would like to encourage every member to pay the modest $30 yearly membership fee. We don’t turn anyone away for non-payment, but we value your continued support which enables us to be there for current and future patients.
The CSRF Board is still very excited 2017! Below are a few highlights of what has transpired thus far in 2017 and some updated future plans.
We just returned from exhibiting at The Pituitary Congress and Endo 2017. Our literature was well received and we hope we made some impact in alerting physicians that the CSRF exists to support patients with Cushing’s. We will also be exhibiting at the European Congress of Endocrinology in Lisbon and the Clinical Endocrinology Update and Board Review later this year. Grant funds do not support exhibit activities.
- For the very first time, the CSRF chose to spend some of our funds on advertising to increase public awareness. Needless to say, this is expensive and grant funding does not cover these expenses.
- The Patient Education Day Committee is actively working on organizing the October 21, 2017 meeting. We hope to have the Public Awareness committee up and going sometime in the next month or so.
- The Cushing’s Patient Pamphlet’s are consolidated under Resources or Quick Links on our homepage and we are actively working on translations. We need funds to make this information available to medical professionals in multiple copies and in several languages.
- We assisted Dr. Jitske Tiemensma with a survey on how Cushing’s affects relationships and data reduction is now in progress. At Endo 2017, Dr. Ilonka Kreitschmann-Andermahr presented a postor on support programs to benefit Cushing’s patients that came from a survey of CSRF membership.
- We hosted a webinar May 6, on Quality of Life: Self Care Strategies and Passionate Pursuits presented by Dawn Herring, LMFT and Cushing’s Survivor.