In 2011, M-CM Network board member Marielle Kulling developed the following anonymous survey as part of her master’s work at MSU. The survey was run online on SurveyMonkey in 2012 and invites were sent to families enrolled in our contact registry at that time.

The results are presented here, broken up in to the pages as they were presented on the survey. You can navigate the survey results with the links at the left. There were 51 respondents to start, but about 11 did not complete the survey, so the number of respondents drops off as the survey goes on. The number of respondents is recorded on questions where this could be known. A few questions that received no responses have been left out.

Many thanks to Marielle Kulling for her hard work on the questionnaire as well as to her advisors for this project at MSU, Daniela Iacoboni, MS, CGC, and Dr. Robert Conway. Thanks also to the group of volunteers that compiled and proofed the results for presentation - including Pamela Oliver, Leslie Sanderson, Katie Corry Parker, Lorraine Yeomans, Lynsey Chessman, and Christy Collins. Finally, thanks to all of the patients and families that took the time to complete this very comprehensive survey.

Please feel free to contact us if you have any questions about specific results of this survey.

Published online Feb 2014