CSRF Mission

• To provide information and support for Cushing's Disease and Cushing's Syndrome patients and their families;
• To increase awareness and to educate the public about Cushing's Disease and Cushing's Syndrome;
• To be a resource for information and support to health care professionals;
• To raise and distribute funds for Cushing's Disease and Cushing's Syndrome research.

The Cushing's Support and Research Foundation was established in 1995 to provide information and support to Cushing's patients and their families. The Foundation was incorporated in the state of Massachusetts as a non-profit organization and is an Associate Member of NORD, the National Organization for Rare Disorders. The CSRF has a Medical Advisory Board consisting of very experienced surgeons and endocrinologists who are world renowned for their expertise on Cushing's. The CSRF is primarily funded by membership and personal donations. Approximately 500 present and past Cushing's patients are members of the CSRF.

To Share
Cushing's syndrome and Cushing's disease are caused by the excess production of the steroid hormone, cortisol. These relatively rare disorders can be physically and emotionally devastating to the patient. Most patients endure years of symptoms prior to obtaining a diagnosis and recovery often requires a substantial period of time. Patients can gain
insight and support through conversations with other patients. Two major objectives of the CSRF are to put patients in contact with other patients and to facilitate the sharing of information between members. These are partially accomplished through the CSRF quarterly newsletter, the CSRF Networking List (both of which are included with membership), and the CSRF Special Newsletter (available to members at additional cost).

Newsletter: Our newsletter includes:

• New information on Cushing's, including articles written by doctors
• Ideas on how to cope
• Helpful hints
• Personal stories
• Answers to patients' questions
• CSRF activities

Networking Contacts:
The CSRF data base of members is extensive and continuously expanding. On request, members are provided with networking contacts by phone or email according to:

• City, State or Country
• Location or type of tumor
• Age
• Type of surgery or surgeries
• Gender
• Types of medication
• Location of SurgeryS

Special Newsletter: The CSRF Special Newsletter is a collection of over 80 very touching personal stories from our members about their experience with Cushing's. Printed in July, 1999, the Special Newsletter is 135 pages long and includes the author's contact information. The Special Newsletter is available to CSRF members for a charge of $20.00, which covers the cost of printing and mailing.

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To Aid
Cushing's is a medical disorder where patients can benefit from expert medical care and information. One of the CSRF's objectives is to provide the best medical information from the best available sources. For this reason, we have established a Medical Advisory Board. The Board is composed of highly experienced surgeons and endocrinologists, many who are active in Cushing's research and world-renowned. These doctors have generously donated their time and resources to provide up-to-date information on Cushing's.

Conferences: Another objective of the foundation is to increase the awareness of Cushing's in the medical community. By doing so, perhaps the time required to obtain a diagnosis can be decreased. Each year, the CSRF exhibits and distributes brochures on Cushing's at medical conferences such as:

• Endocrine Society Annual Meeting
• Internal Medicine
• Primary Care
• Psychiatry & Psychology

Web Site
The CSRF responds to daily to many inquiries and many members have found the CSRF on the Internet.

Public Awareness: The CSRF also strives to increase the public awareness of Cushing's. Each year, the CSRF contacts numerous media sources in hopes of increasing the mention of Cushing's in the press.

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To Care

CSRF Board of Directors

Louise Pace
Founding President

"It took me 3 long years to discover the name of the demon that was destroying my body and mind. I will spend the rest of my life working to keep the spotlight on Cushing's disease/syndrome so that others might have a chance "to see it and beat it" as well."

Mary Brim
Membership Director

"CSRF has given me the opportunity to talk with others who have gone through Cushing's. It has been a while since my diagnosis. I still reread past newsletters. I now can help others that are going through what I have. It also allows me to keep current with research on Cushing's."

Karen Campbell
Director

"It took me 3 years and 21 doctors to get a diagnosis. I often wonder if I would be better off now if I'd been diagnosed sooner. Thus, my desire to help increase awareness so others can be diagnosed sooner. With my scientific background, I needed a lot of information and when I searched, I found very little. The CSRF gives me an opportunity to help gather the type of information I was looking for and make it available to others"

Elaine Wolman
Director
949-455-0555 phone
949-455-0585 fax

Dr. James Findling, MD
Endocrinology & Diabetes
St. Luke's Medical Center
Milwaukee, WI

John P. Gulielmetti
Treasurer
Boston, MA

Meg Keil, MS, CRNP
Director of Pedriatric Programs NICHD, NIH , Bethesda, Maryland.

The Cushing's Support and Research Foundation is a non-profit organization incorporated in the state of Massachusetts to provide support and information to those interested in Cushing's. This Web Site is for informational purposes only, and does not replace the need for individual consultations with a physician. CSRF does not engage in the practice of medicine, endorse any commercial products, doctors, surgeons, medications, treatment, or techniques. The opinions expressed on this web site are those of the individual author and do not necessarily reflect the views of individual officers, doctors, members, or health care providers.

For more information, please write to:

CSRF
65 E. India Row
#22B
Boston, MA 02110
Email: cushinfo@csrf.net
617-723-3674 phone and fax

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