2017 Conference Workshops Now Available on YouTube

We had eight great workshops at the 2017 Conference in Washington DC. Here are the slides and the audios.Feel free to share!

2017 International Family Conference Feedback Survey

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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.

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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!

overall

2017 International Family Conference

Jun 29 to July 01, 2017 – Washington D.C.

Three days filled with lectures, workshops, Q&A sessions and activities for parents, individuals with Mowat-Wilson Syndrome and siblings. Guest speakers include Dr. David Mowat and Dr. Margaret Wilson among many other specialists that will speak on topics that affect most families like: Bowel Management, Mobility, Adaptive Technologies, Advocacy, Grieving and Stages of Acceptance, Epilepsy, etc.

LOCATION/HOTEL

The conference will be held at the Crystal Gateway Marriott Hotel in Arlington, VA. Rooms will be blocked for the families at a discounted rate. We will let you know when reservations open.

AIRPORTS

For domestic flights use Reagan National Airport in Arlington, VA and take advantage of free shuttles to the hotel (courtesy of the Marriott). For international flights the best option is the Baltimore/Washington Airport (BWI).

REGISTRATION

Early Registration Discount available until March 31, 2017. Registration closes May 31, 2017 or when venue full capacity is reached.
Click here to Register.

2016 Seattle Medical Forum

October 15, 2016 – Seattle, WA

The Medical Forum will be an informative program for families and medical students. The morning program will include updates from the doctors on the various studies that are being conducted on Mowat-Wilson Syndrome. Doctors Wilson and Adam will conduct a clinic in the afternoon for the medical students in attendance. There will be additional speakers in the afternoon.

Due to the limitation of 30 Mowat-Wilson Syndrome patients, we will give preference to the families living on the West Coast (west of the Rocky Mountains). The other families will be placed on a waiting list and selected on a lottery basis if necessary.

Contact debyc@mowat-wilson.org for additional information

Download the 2016 Mowat-Wilson Syndrome Seattle Forum Program.

We will be streaming the Northeast Medical Forum live from Seattle on our Facebook page. After the event, we will be posting all videos for you to watch and share with your friends, families, doctors and therapists.

2016 Atlanta Family Pool Party & BBQ

August 20, 2016 – Atlanta, GA
1:00 pm – 6:00 pm

Location

Al & Susan Triunfo’s place
901 Dogwood Trail, Tyrone, GA 30290

Join us for a fun filled day! Swimming pool with basketball hoop, putting green, corn hole, bocce ball and other games. BBQ served around 4 p.m. Hamburgers, hot dogs, sides & fixins! Please bring your own towels. Hope to see you there!

Contact susant@mowat-wilson.org for additional information.

Registration has closed.

2016 Annual Family Beach Day – CT

August 21, 2016 – Camp Harkness – Waterford, CT
10:30 am – 3:00 pm

Camp Harkness - Waterford, CT

Camp Harkness – Waterford, CT

The Mowat-Wilson Family Beach Day is an informal and relaxing day when families gather together to enjoy themselves and exchange experiences. Families must bring their own beach apparatus (umbrellas and tents are a must) and food easily eaten at the beach. There are bathrooms and showers.

For families arriving on Friday/Saturday we recommend staying at the Holiday Inn Express Mystic in Mystic, CT. The hotel offers free breakfast, microwave/fridge in the room and a pool with handicap lift. It is conveniently located across the street from the Mystic Village where the Mystic Aquarium is located. A group trip to the Aquarium is being planned for the Saturday afternoon.

Contact laurac@mowat-wilson.org for additional information.