Conference Brochure Roanoke 2020

Printable/Downloadable Brochure for SOFT’s 34th annual medical & family conference,
in beautiful Roanoke VA, July 15 – 19, 2020!
(it’s early, so this brochure will be under construction for several months!)

Click here to learn about Roanoke!

Scroll down and use the blue links to view preliminary conference information!
<< The print icon is at the end of the brochure, below. >>

The 2020 conference will be held at the historic Hotel Roanoke and Conference Center, 110 Shenandoah Ave NW, Roanoke, VA 24016.  Phone: 540-985-5900.  The special SOFT rate is $134/night plus tax, single/double/triple/quad.   Hotel registration is now open and the special rate code is “SOFT20“.   The rate will be available up to three days prior to, and after, the conference.   Remember, a hotel registration does NOT register you for the conference; that is separate and should begin in March…see “Registration,” below.  The hotel offers on-site self and valet parking.  Ask about any costs when registering.

Hotel Roanoke’s Restaurants, Coffee Shops & Cafes


On-line Conference Registration is expected to open in March.  A general email announcement will be sent to all members.  Costs are as follows:

    • Full Conference Adult registration (age 12+) – $125
    • Full Conference Children registration (age 5 – 11) – $99
    • Children under 5 years old and SOFT children are free
    • Picnic-Only Adult (age 12+) registration – $35
    • Picnic-Only Child (age 5 – 11) registration – $25
    • Picnic AND Auction Adult registration – $45
    • Picnic AND Auction Child registration – $35
    • If attending ONLY Thursday’s Lunch & Workshops, the cost is $55

NOTE:  After midnight, June 30, EST, the Adult registration cost will rise to $140 as the hotel will charge us for reworking their meal supplies and costs.

If you would like to donate funds to a specific conference activity, or to general conference expenses, please click here.


The SOFT Check-in Room will be open at  9am-7:30pm on Wednesday – location TBA.  Please check in as soon as you arrive so you can receive your conference bag which contains essential conference information and much more.

The tentative CONFERENCE SCHEDULE is below.  This is preliminary so be sure to check the schedule given to you at checkin as events and locations may change:
Wednesday, July 15                                                        Thursday, July 16
7am Memory Room Opens                                               7a Memory Room Opens
7:30-9:30 Board of Directors Breakfast                           7a-9a Breakfast
8:30-12:15 and 1:30-6:30 Daycare open                           8:30-5p Daycare Open
(Daycare for Board members only)                                  9-9:45 Registration Open
9:00-7:30p Registration Room Open                               10:15 New Family Orientation
9-12 Board Meeting Session 1                                         10:30 Younger Sibs leave for Outing
12-1:30 Board Lunch                                                         10:30 Older Sibs leave for Outing
1:30-5:45 Board Session 2                                                11:00 Remembrance Outing

7:30p-9:20p “Meet and Greet” under the STARS            11-12 Clinic Lunch for Clinic Attendees
9:20-10p Proclamation of STARS                                     12-4:30p Medical Forum-Clinics
                                                                                             5p (approximately) Outings Return
                                                                                             6:30 Welcome Dinner (Zion Lint Parade
                                                                                             of Stars, Erin Jorgensen Memorial Scholarship
                                                                                             presentation, Kari Holladay award presentation, and more!

Friday, July 17                                                                     Saturday, July 18
7a-5p Memory Room Open                                                7a-11pm Memory Room Open
7-9a Non Chapter Chair Breakfast                                    7-9a Breakfast
8-9a Chapter Chair Breakfast                                            9a Jonathan Cook Stroll for Hope
8:30 Daycare open (closed 12-1:15)                                 followed by Business Meeting and SOFT Video
9:30-10:30 Workshop Session 1a                                       10:30-11:30 Sharing Time
10:30-11:30 Workshop Session 2a                                     12 Busses Load for Picnic
12-1:30 Lunch on your own downtown                            12:30-3pm Picnic
1:30-2:45 Workshop Session 3a                                          3-3:45 Ryan Cantrell Balloon Celebration
3-4:30 Workshop Session 4a                                               4p Busses load for hotel
5pm – ? Family fun night TBD/Dinner on your own         6:30-? SOFT Auction

Sunday, July 19
6:30-9:30 Light Breakfast
10-10:30 Nondenominational Church Service
10:30-11 Closing Remarks


Thursday Medical Forum/Clinics will be provided by some great clinicians; specific locations and times will be announced soon.
This list will be updated as schedules are firmed and events are added, usually in February/March.

  • Cardiology
  • Pediatric ENT
  • Genetics 101
  • Medical Genetics & Tumor Risk
  • Ophthalmology
  • Physical Therapy




Workshops will be held Friday, July 17.  The 2020 workshop list will be published when it is known…probably in February/March.   Keep checking this website for updates, and upon arrival at the conference,  refer to your “conference bag” handouts for any last minute updates.:.

  • Workshop 1a 0930-1030 TRIS Project, Debbie Burns
  • Workshop 2a 1030-1130 Trisomy 9 Parents Panel
  • Workshop 3a
  • Workshop 4a & b:  Mom’s & Pop’s sessions




Thursday night’s Welcome Dinner will feature a Keynote Speaker and events such as the Parade of Stars, Erin Jorgenson scholarship award, other awards, entertainment, and plenty of opportunity to socialize with families and friends!.

SOFT’s Annual “SOFT Friends” video, in memory of Kari Holladay, will be shown during Saturday morning’s Business Meeting.  A link explaining the video and how to submit photos will be posted here at the appropriate time. Emailed photos must be sent to Kris by (TBA).   Mailed photos must arrive by (TBA).

The annual SOFT Remembrance Outing  will be held at (TBA)  on Thursday afternoon – see schedule for times..

The Older Siblings Outing will be a River Tubing Party.  The cost is $(TBA) which includes transportation, a T-shirt and Lunch.  See the schedule for bus loading and return times.  Younger Siblings will go to the Science Museum, (Cost is TBA) and lunch will be provided for them as well.

The  Memory Room will be will be open as outlined in the conference schedule. Please bring photo albums or other memorabilia to display!  Be sure to remove your belongings prior to closure!.

The Saturday picnic will be held at (TBA).  See the Schedule for times.


The annual balloon celebration will be held at the Saturday Picnic.  Use the registration form to request a balloon release.  Conference attendees may also request one on a “walk-in” basis, at the picnic.

The Auction will be held Saturday night and details will be posted here when they are known.  Please send your Auction Donation Items to: Jamie Lint, PO Box 1074, Raven VA 24639

Child care will be provided as detailed in the schedule – please refer to that for times, and your information packet should indicate the room number.

The Joey Watson Memorial Conference Attendance Assistance fund exists to help needing and qualifying families who require transportation and registration assistance to attend the conference.  The deadline for submitting the form is May 15th and requestors must seek other assistance in their communities prior to asking for help from this fund.  These funds are very limited, so start early.  Click the blue link above to open the application form.

Transportation Security Administration (TSA) Travel Tips,
for those traveling by air with children and/or equipment.


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