“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.” Louise founded the CSRF as a 501(c)3 in the state of Massachusetts in 1995.
President and Director since 2015
Leslie Edwin became President of the CSRF in 2018 after serving as the Director of Support Groups where she served as the contact person for all support groups, helped with the establishment of new groups and coordinated with all group leaders. Leslie was diagnosed with Cushing’s Disease in late Summer 2012 after a rapid onset of textbook symptoms. Through the swift action of an informed gynecologist and endocrinologist, she was fortunate to not experience much delay in the process leading to transsphenoidal surgery in December 2012. Another surgery in January 2013 resulted in hypophysectomy; a CSF leak and meningitis followed soon after. Under the expert care of Dr. Nelson Oyesiku and Dr. Adriana Ioachimescu at Emory University Hospital, Leslie achieved “remission” in April 2013.
Leslie split the majority of the last two decades between the Financial Services Industry and self-employment as a Private Chef. Leslie has worked with the Girl Scouts in almost every position for 13 years, is on the Board of the Lilburn Community Partnership, and recently became President of the newly-formed Lilburn Lions Club. She feels fortunate to be able to dedicate a good portion of time to these groups and the CSRF. “After the intensity of the Cushing’s experience, it was impossible not to get involved to do whatever I can to make the process easier for people in all phases of the disease. I also want to ‘pay it forward’ to honor the doctors, specifically Dr. Oyesiku, who were instrumental in bringing me back to life. “
Dr. James Findling, MD, FACP
Endocrinology Center and Clinics
Medical College of Wisconin
Menomonee Falls, WI
Board Member since 2000
Dr. James Findling is Professor of Medicine at the Medical College of Wisconsin, Milwaukee, Wisconsin. He is a graduate of the University of Notre Dame and Northwestern University Medical School. He completed his internal medicine training at the Medical College of Wisconsin and his post-doctoral fellowship in Endocrinology and Metabolism at the University of California-San Francisco. He started his endocrinology practice at St. Luke’s Medical Center in Milwaukee in 1982 and he started the Endocrine-Diabetes Center at St. Luke’s in 1987. Dr. Findling joined the full-time faculty of the Medical College of Wisconsin in 2008. He has over 100 publications and book chapters and is considered an international expert on clinical disorders of pituitary and adrenal function and was instrumental in establishing the night-time salivary cortisol diagnostic test for Cushing’s. He has served as visiting professor at many institutions including the Mayo Clinic, Massachusetts General Hospital, Johns Hopkins, University of Iowa, University of Wisconsin, Northwestern University, University of Kansas, University of Texas-Southwestern, University of Colorado, University of Nebraska, University of Pittsburgh, and the Cleveland Clinic. In February 2013, he was honored in New York as the Lester J. Gabrilove lecturer in Endocrinology at Mt. Sinai Medical Center.
Meg Keil, MS, CRNP, Ph.D
Director of Pediatric Programs NICHD, NIH , Bethesda, Maryland
Board Member since 2005
Meg F. Keil. Ph.D., C.R.N.P. is a pediatric nurse practitioner and researcher with the National Institute of Child Health and Human Development at the National Institutes of Health in Bethesda, Maryland. Dr. Keil received a Bachelor of Science in Nursing, with a minor in psychology from Georgetown University in 1980 and a Master’s degree in pediatric ambulatory nursing from the University of Colorado in 1983. She received a Ph.D. in Nursing from the Uniformed Services University of the Health Sciences in 2011. Her current research focuses on pediatric Cushing syndrome, biobehavioral outcomes of early life adversity, and quality of life and other outcomes associated with chronic endocrine disorders in children. Dr. Keil has authored or co-authored numerous articles on pediatric endocrine disorders, including Cushing syndrome, congenital adrenal hyperplasia, obesity, and pituitary tumors.
Treasurer and Director since 2014
Elissa is a product leader and has worked at several tech companies in Silicon Valley. She earned her MBA from the Tuck School of Business at Dartmouth. While in business school Elissa had leadership roles in the Technology Club, Media Club, and was a Fellow in the Center for Digital Strategies. She has a particular interest in using social media for non-profits. Elissa has been helping the CSRF in numerous areas over the past several few years and she is responsible for CSRF’s continuing website work, database and presence on social networks. She is also the Treasurer
Prior to business school, Elissa spent four years working in advertising sales and operations at the Wall Street Journal. During this time she was also the co-director of Cents Ability, a non-profit dedicated to teaching teens the fundamentals of financial literacy.
Elissa overcame Cushing’s Disease while an undergraduate at Harvard (from which she graduated with honors in 3.5 years!).
1995 – 2017
Karen was diagnosed with Cushing’s in the early 1990’s and started with the CSRF in 1995. “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.” Karen holds a Bachelor’s degree in Chemistry and a Master’s degree in Molecular Biology.
John P. Gulielmetti
1995 – 2016
John Gulielmetti is Senior Vice President-Investments, UBS Financial Services One Post Office Sq, Boston, MA. John is a graduate of Boston University and served 2 years in the US Army. He formed the Gulielmetti Group while at Morgan Stanley in Boston. John’s focus is on individual retirement planning and portfolio management, and providing clients with dedicated, high quality service focusing on helping them pursue their financial goals. John is a Member of the UBS President’s Council and was named one of the industry’s 10 BEST BROKERS, by the magazine, On Wall Street in 1996. John served as treasurer and Director of CSRF, founded by his wife Louise Pace.
2012 – 2015
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.
Ellen Koretz Whitton
2010 – 2017
Prior to becoming a CSRF Board member, Ellen 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.”
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.