Louise Pace
Founding President

“It took me three 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.”

Karen Campbell
Director

“It took me three 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.”

Lee Carlson

Lee is a high school English teacher, Head Football Coach, and Assistant Track Coach in St. James, MN. Lee also directs the Mentorship program for the local school district. Lee has written for over a dozen newspapers and has done several speaking events to share his personal experience with Cushing’s. “It has been over ten years since I had a bilateral adrenalectomy due to bilateral adrenal hyperplasia that was causing my Cushing’s. I don't go a day without remembering the long years battling Cushing’s. For about five years prior to that diagnosis, I suffered with symptoms such as depression, high blood pressure, restlessness, and I’d been through every imaginable test and medication. I was so fatigued, was having muscle spasms, and I couldn’t sleep more than two hours at a time. After five years of going downhill, the diagnosis was more of a relief than something scary. Life has been very good since then and I want to do what I can to help others with Cushing’s avoid the elongated period it took for me to find a diagnosis and to help speed their recovery. Obviously, increased awareness will help with both of those objectives. It still amazes me that so little is known about Cushing’s in the general public.” Email: lcarlson917@gmail.com

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

Ellen Koretz Whitton

For the last several years, Ellen has volunteered her time to the CSRF and staffed numerous exhibits for the CSRF. Her recovery inspired her to complete an Associate of Applied Science degree in Social and Human Services at Seattle Central Community College, after which she hopes to work with people living with chronic illness. “When I developed a constant, unquenchable thirst, my doctor diagnosed me with Type 2 diabetes, telling me that there was no cure and it would gradually get worse. I was counseled to ‘make lifestyle changes’ and given oral medication. When my doctor recommended that I start injecting insulin, I asked for a second opinion. I was referred to an endocrinologist, who ultimately diagnosed me with Cushing’s disease. I had pituitary surgery in 2007 and my diabetes resolved. My own diagnosis was an extraordinary stroke of luck. With 3% - 5% of poorly controlled Type 2 diabetics potentially suffering from Cushing’s, it is essential that Cushing’s patients not get lost in the rising concern about the ‘diabetes epidemic’. I welcome any opportunity to spread the word about Cushing’s, particularly among diabetes practitioners and their patients. This may be where a great many people with undiagnosed Cushing’s can be identified and offered hope for a healthy life. Email me at ekwhitton@earthlink.net.”

CSRF Welcomes Emily Acland to the Board of Directors

The CSRF would like to welcome Emily Acland to the CSRF Board of Directors! Emily was introduced to the CSRF community while working for The Endocrine Society — you may have received a kindly worded email from her in response to one of your Cushing’s queries! Although she moved on from The Endocrine Society to her current role of Associate Manager of External Relations for the Patient Access Network Foundation, she was eager to continue her involvement with the Cushing’s community she had come to love. With the CSRF, Emily is continuing to respond to emails as needed and participates in special projects. We are excited to have her on board and welcome her enthusiasm, ideas and experience!

In her current position at the Patient Access Network, Emily’s work focuses on improving access to medications for underinsured patients with chronic or life-threatening illnesses through which she channels many of the patient experiences she has learned of through the CSRF. She is passionate about helping patients with rare diseases and strives to improve the quality of life of each patient she encounters by helping them navigate the sea of resources available, or even just by lending an ear. Emily is a graduate of the University of Kentucky Gatton School of Business with a focus in marketing.