Moebius Syndrome Foundation Portland Mini-Conference

Agenda

 *Certain events subject to change pending number of registrations

Friday, April 5, 2019

7:00 - 10:00 PM

Adult Meet-up

Adult Meet-up at Jantzen Beach Bar & Grill

 7:00 - 10:00 PMTeen Meet-up*Teens will have their own private suite for an evening of fun: pizza, soft drinks, video and other games; chaperone provided. 


Saturday, April 6, 2019  - Detailed Agenda

 TimeEvent

7:30 - 9:00 AM

Breakfast and Registration

 8:30 - 9:00 AMChild Care Opens (ages 0-2)
 8:30 - 9:00 AMPortland Camp Moebius Opens (ages 3-12)

9:00 – 9:15 AM

General Session opens: Welcome Remarks

9:15 -9:25 AM

Research Participation Opportunities

9:25 - 9:55 AM

The Psychology of Living Well with Moebius

9:55 - 10:50 AM

Navigating Employment with Moebius Syndrome; Legal Protections in State and Federal Law & Understanding 504

10:50 - 11:00 AM

Break - Change rooms for breakout sessions

 11:00 - 11:30 AMHelping Parents Answer Hard Questions: Experiences Shared by Parents of Moebius Children, and Moebius Young Adults

11:00 – 12:00 PM

Just for Women with Moebius Syndrome

11:00 – 12:00 PM

Just for Men with Moebius Syndrome

11:00 – 12:00 PM

Just for Teens with Moebius Syndrome

11:00 – 12:00 PM

Just for Children with Moebius Syndrome: Chat & Art Therapy

11:30 – 12:00 PM

Feeding a Child with Moebius Syndrome

12:00 – 1:00 PM

Lunch

 1:00 - 1:30 PMHugs & Photos with Rojo the Therapy Llama
 1:30 - 2:30 PMHow You Can Host an Awareness or Fundraising Event

2:30 - 2:45 PM

Closing Remarks

2:45 - 3:00 PM

Coffee Break and Change Rooms

3:00 – 4:15 PM

Adults with Moebius Coffee & Mingle

3:00 - 4:15 PM

Just for Moms

3:00 - 4:15 PM

Just for Dads

3:00 - 4:15 PM

Just for Grandparents & Other Relatives

3:00 - 4:00 PM

Leadership and Mentoring for Teens & Young Adults

4:30 PM

Child Care Closes

7:00 - 10:00 PM

Moebius Family Dance

Sunday, April 7, 2019 
 11:00 AM - 1:00 PMPicnic at Washington Park- meet at Elephant Pavilion. Food & Drinks provided. Open to all!

  • Friday, April 5, 2019
  •  
    7:00 PM  -  10:00 PM
    Adult Meet-up  (Adult Meet-up)
    Jantzen Beach Bar & Grill
    All adults are encouraged to meet for socialization and a chance to get to know each other better before the meeting on Saturday. Located inside the Red Lion Hotel, the Jantzen Beach Bar & Grill is set with a stunning view of the Colombia River. If parents do not have child care, please feel free to bring your children along. The restaurant and bar areas are family friendly. This event is self-pay onsite.
     Optional 
  • Saturday, April 6, 2019
  •  
    8:30 AM  -  4:30 PM
    Child Care
    Pendleton
    Child care program
    Fee  Optional 
    8:30 AM  -  4:30 PM
    Portland Camp Moebius (Child Care for ages 3 - 12 years)
    Weyerhauser
    Children ages 3 - 12 years are encouraged to enroll in the Portland Camp Moebius for a day of making new friends, crafts, games, and educational sessions.
    Fee  Optional 
    9:00 AM  -  4:30 PM
    General Session
    General Session for adults and teens.
     Optional 
    7:00 PM  -  10:00 PM
    Moebius Family Night Dance  (Dance)
    Mount St. Helen's Ballroom
    Please invite your family and friends, and join in the fun for our first Moebius Family Night Dance! This will be a great way to end our meeting day. Light refreshments will be served.
     Optional 
  • Sunday, April 7, 2019
  •  
    11:00 AM  -  1:00 PM
    Picnic at Washington Park
    Meet us at Washington Park! Everyone is welcome to participate in a free picnic at Washington Park on Sunday, April 7. There is something for everyone to do there! Food and drinks will be provided (sandwiches, chips, cookies, etc.). We are reserving a The Elephant House Pavilion picnic area next to and ADA friendly playground area from 11:00 AM - 1:00 PM.
     Optional 
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