The Moebius Syndrome Foundation, the nation’s largest organization dedicated to providing information and support to individuals with Moebius syndrome, is hosting its 1st Mini-Conference in Portland, Oregon, April 5-7, 2019. This is an exciting new venture with a goal of bringing a taste of the national conference to families and individuals across the nation. These small meetings will be more affordable and accessible to many, and we are proud to be able to support these important events.
Mini-Conferences will be held in different locations, twice a year. They will focus on support for families and individuals with Moebius syndrome, education, social activities, and some research opportunities. We invite you to join us. Thank you for your support.
Venue: The Red Lion Jantzen Beach
- Hotel reservations for our group will be available by January 4, 2019. Discounted dates will include all days of the event: April 5-7, 2019.
- Best rate guarantee: $124 (+Tax)/ night. Attendees interested in staying at the meeting hotel will not be able to find a better rate online!
- A group reservations link will be posted on this website and announcements sent out
- Airport shuttle is not available at this hotel (about 15 minutes ride to PDX)
- Complimentary parking available onsite
- Complimentary WIFI
- Onsite restaurant and bar, and coffee bar
- Complimentary shuttle across the bridge to Vancouver, Washington’s downtown shopping and restaurant areas
Registration: Begins January 4, 2019
Registration updates will be posted on this website and announcements sent out!
- Cost for Adults, $75 ; Children, $50 (includes child care).
- Registration rates will include breakfast, lunch, and coffee break service, program, and family dance on the meeting date of April 6, 2019. Each registered child, ages 6 months – 12 years, will be provided with child care program services during the meeting on April 6. Staff that is trained and experienced will be provided through NW Nannies. The Moebius Syndrome Foundation is proud to be able to be able to subsidize this expense so that more parents and families are able to fully attend.
- Any optional outside activities taking place on Friday or Sunday are at an additional cost to the attendee.
Sponsorship and Donations: Now available! Portland Mini-Conference Sponsor and Donation Options_Dec18
Friday, April 5, 2019- Optional Adult Meet-up (to be announced)
Saturday, April 6, 2019- General Sessions, Child Care and Portland Camp Moebius opens; Family-friendly Dance from 7:00 – 10:00 PM
Sunday, April 7, 2019- Optional Family-friendly outside activity (to be announced)
Agenda: Subject to change; more details and updates to come soon!
Some of the sessions at the Portland Mini-Conference include the following:
- The Psychology of Living Well with Moebius, presented by Dr. Kathleen Bogart
- Knowing Your ADA Rights in Education and Employment
- For Parents: What I Wish I Knew Then, That I Know Now
- Just For Moebius Men, Women, Teens, and Children sessions
- Just for Dads, Moms, Grandparents, and Other Relatives sessions
- Moebius Adults Coffee & Mingle
- Feeding a Child with Moebius Syndrome
- How to Create An Awareness and Fundraising Event, by Kelsey Ferrill and Dina Scalone
- Round Tables Planning Session: Meetups and Awareness
- Leadership and Mentorship for Teens & Young Adults, by Steven Maldonado
- Research and testing
Child Care and Portland Camp Moebius: Child care services will be available on the day of the meeting, and provided through NW Nannies. Child care fees are covered in the children’s registration fee, and include service from 8:30 Am – 4:30 PM on Saturday, April 6, 2019. Children ages 6 months – 12 years will have a fun day with arts & crafts, games, and other entertainments. The Moebius Syndrome Foundation is proud to be able to be able to subsidize this expense so that more parents and families are able to fully attend.
Airport: The closest major airport to the meeting venue is PDX.
Local Transportation: We recommend using Uber and Lyft. Both are very common in Portland.