Thank you to everyone who completed the Foundation survey to provide feedback for our 2017 conference in Washington, DC. Over half of the attending families responded with details of what they liked and what could be done better. We will keep all of your statements in mind as we prepare for future events.
We asked for 3 things you learned at the conference that will help you to care for your MWS child. Not surprisingly, there were certain themes repeated:
- #1 response – Communication and Learning was mentioned by 20 respondents. We learned about devices, learning and teaching techniques, and most importantly to assume intelligence believing that your children can learn AND express themselves. Give them time, and don’t give up!
- #2 response – Bowel Management was mentioned by 14 respondents. Hope for progress in this area is universal. Every MWS family has a few memorable poop stories, and we learned that it is possible to make headway with bathroom training. This is truly a quality of life issue for all.
- #3 response – Seizures were mentioned by 12 respondents. We learned about testing for ESES, seizure medications, signs of seizures, and consequences of seizures for sleeping and cognitive processes.
- #4 response – Music Therapy was mentioned by 6 respondents. While we all know our MWS kids enjoy music, it was enlightening to learn about the therapeutic value of musical activities.
In a category unto itself were responses of feeling a part of a bigger family, having an understanding community, and not feeling alone with the struggles of MWS. The fellowship with other families who experience the same challenges brings so much hope to our lives!
The favorite parts of the conference were Interactions with other MWS families, the Workshops, and not surprisingly, meeting Dr. David Mowat and Dr. Meredith Wilson, our namesakes. We received mostly favorable responses on the conference cost relative to the value received. The Foundation calculates that it covered approximately 60% of the total conference cost from accumulated donations, which relieved some of the family expenses.
Many of you expressed willingness to serve on the Board of Directors in the future, which is much appreciated!
In the category of what could have been better we received many comments that parents of adults with MWS have some unique topics of interest that could be addressed. Also, the feedback was good regarding the Sibling Seminar, but the younger siblings could have benefitted from a special event for them as well. And finally, facilitated, structured discussions between parents who can share experiences with each other (as opposed to only being presented to) would be valuable.
The Mowat-Wilson Syndrome Foundation Board of Directors takes all of your feedback to heart. We were delighted with the attendance and enthusiasm for the conference, and feel that many strong friendships and bonds were formed. Thank you for your comments and suggestions, and we look forward to seeing you again!