As you are well aware, Cushing’s is a relatively uncommon disorder, thus we are spread throughout the country without a large number of us in the same location, except maybe in large metropolitan areas. I’m sure that you remember how alone you felt when you had Cushing’s. Local support groups are one way that we can help others through the various stages of Cushing’s. Whether you are long past Cushing’s or currently recovering, these groups could use your help! If there is a support group meeting in your area, please make an effort to contact these support group leaders. You never know when you might be the one to make an incredible difference in someone’s life. The other thing that you can do to help is to let your local doctors know about the support group.

June, 2015
By Leslie, Director of Support Groups

The CSRF enthusiastically encourages the formation of support groups.  The social aspect of caring for each other through all stages of Cushing’s is vital and cannot be overlooked.  Support groups give us an opportunity to connect with each other and local doctors and other medical professionals who are working toward better understanding, diagnosis, and treatment of Cushing’s.

We currently list CSRF-affiliated support groups in the newsletter.  We are working on a page dedicated to groups on our website as well, so keep an eye out for that.  If you are interested in exploring the possibility of starting a CSRF-affiliated support group, please contact the CSRF. 

We are proud to announce the successful formation of a group in the Washington DC area led by Stacy and Renee.  CSRF Board Member Dr. Meg Keil from the NIH was in attendance at their first meeting on Saturday, April 11; Stacy reports that the meeting exceeded both her and Renee’s expectations and they look forward to the next one.  In other news, the Boston group facilitated by Heather is now meeting at Mass General Hospital with assistance from Dr. Beverly MK Biller, who is on our Medical Advisory Board.  Barb Gallagher just facilitated another good meeting in Chicago as well.  Thank you all for your efforts!

September, 2014
Support groups in the Los Angeles, CA area, Harrisburg and Philadelphia, PA area and North and South Carolina are just starting, so they would particularly welcome contact from anyone in their area.

The group in the San Francisco area has been meeting for a number of years and they thank Dr. Lawrence Katznelson from Stanford University for assistance and attending their meetings.

Leslie reports that “the Atlanta group is coming up on its first anniversary in September and meets approximately quarterly. We started with eight members and now have a mailing membership of over 20. One of our members recently had a healthy baby in between pituitary surgeries – truly a miracle. Even though we don’t all talk on a regular basis, there is a very strong sense of community and we keep in touch via e-mail in between meetings. We are looking forward to the upcoming Emory Pituitary Education Day, details TBA.”

Barb reports that “the Chicago support group met for the first time in late spring at the Elmhurst Public Library. It was a meeting that was long in the planning. We began with introductions, each person sharing their past journey as well as their future journey. One of our goals is to develop a list of resources to which our Chicago members can refer, such as doctors, facilities, procedures, medications, etc. Our meeting is very casual and we plan to get together approximately 4 times per year. The next meeting will be in mid-September.”

Heather reports that “the Boston group is still on the small side and includes people at varying stages of diagnosis and recovery. We meet about twice per year to stay connected and discuss where we are in our journeys towards a new normal.”

In Western Massachusetts, Mark had a speaking engagement at Massachusetts General Hospital about what he went through as a Cushing’s patient and survivor. The conference included medical staff from Massachusetts General Hospital, as well as scientists and representatives from Novartis.

Mariam reports that “the group in New York City has met four times at the West Side YMCA in Manhattan. It was really nice for us to exchange stories and validate each other’s feelings about the effects of Cushing’s disease/syndrome. As a group, we felt that trying to see the positive in life after cure is important as well. If together we can override the challenges that Cushing’s disease/syndrome brings, we will emerge as survivors.  Do to the difficulty of working out a schedule that suits us all, we have not met for a while, but we do support each other online as needed. Always know you are not alone in this challenge and we welcome others that would like to participate!”

The group in Shropshire, England, has been supporting a patient as she goes through the diagnostic process. They invited Professor John Wass of Oxford University to speak. His presentation, entitled “Pituitary Tumours’ – Commonly Missed and Easily Badly Treated”, will soon be available on film.