Leslie Edwin, President of the Cushing’s Support and Research Foundation (CSRF), and Gretchen Jordan, Associate Director of the CSRF, discuss how their organization supports patients with Cushing’s disease/syndrome.



Cushing’s syndrome is a rare endocrine disorder caused by prolonged exposure of the body’s tissues to high levels of cortisol. Signs and symptoms of Cushing’s syndrome include:

  • Upper body obesity
  • Fatigue
  • Muscle weakness
  • High blood pressure
  • Backache
  • High blood sugar
  • Easy bruising
  • Bluish-red stretch marks on the skin

Affected women may also experience irregular menstrual periods and increased growth of body and facial hair. This condition may be caused by a variety of factors including long-term use of corticosteroid medications, tumors in the pituitary gland or adrenal adenomas.

The CSRF was founded in 1995 by Louise Pace, a patient with Cushing’s disease, with the goal of supporting patients and their caregivers. Today, the organization emphasizes the development of Cushing’s drug therapies and advocates for normalization of Cushing’s disease screening. The foundation also gives patients the opportunity to participate in research and conferences. 

The Cushing’s Support and Research Foundation

To learn more about Cushing’s syndrome and other rare endocrine disorders, visit https://checkrare.com/diseases/endocrine-disorders/