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!)

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, single/double/triple/quad.   SOFT’s  special rate code and opening of the booking will be announced here, later.   The rate will be available up to three days prior to, and after, the conference. Don’t forget to register for the Conference, in addition to your hotel registration!

Click here to learn about Roanoke!

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

On-line Conference Registration is expected to open in March. Adult registration (age 12+) is $TBA; children aged 5 – 11 are $TBA.  Children under 5 years old and SOFT children are free.  Picnic-only registration is $TBA (adult, 12+) and $20 (child, =>5).   If attending ONLY Thursday’s Lunch & Workshops, the cost is $TBA.  NOTE:  After midnight, June 30, EST, the Adult registration cost will rise to $TBA as the hotel will have to rework their meal supplies and costs.  (TBA = to be announced, later).

The SOFT Check-in Room will open at 1pm 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.

Click here to view the conference schedule – Check the conference bag received when  you check in for revisions.  The Registration Room will open at 1 pm on Wednesday – please register immediately upon arrival.   Note, this is a sample schedule, from the 2019 conference and it will be updated as the 2020 schedule firms; likely next February/March.



Friday afternoon Clinics will be provided by some great clinicians; location will be announced soon.

.  A << typical roster >> of clinics is listed below. This will be updated as clinics and schedules are firmed, usually in February/March.

  • Otolaryngology
  • Infectious Disease
  • Immuno-Hematology
  • Genetics
  • GI
  • Ortho
  • Pulmonology




Workshops will be held Thursday, July 19.  Last year’s workshops are illustrated below; the 2020 list will be published when it is known…probably in February/March.   Upon arrival at the conference,  refer to your “conference bag” handouts for any updates.:.

  • 1a Cardiac Surgery, Dr James Hammel
  • 1b Self Care
  • 1c Wheelchair and Seating
  • 1d Simon’s Law
  • 2a The TRIS Project, Debbie Bruns, PhD
  • 2b Canvas Painting Party or Cardmaking
  • 2c Wheelchair and Seating
  • 3a Genetics, Dr John Carey
  • 3b Light Sensitivity, Seizures, Headaches, Dr Steve Cantrell
  • 3c Wheelchair and Seating
  • 3d “I am the journey” – Martina Biagi
  • 4a Mom’s Only – Sharing Workshop
  • 4b Dad’s Only – Sharing Workshop







The Welcome Dinner will be held Thursday night and the Keynote Speaker will be (this will be updated when it is known).   The dinner events will include the “SOFT Friends” video, the Erin Jorgenson scholarship award, 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 at the Welcome Dinner Thursday night.  A link that explains the video and how to submit photos to Kari’s mom, Kris will be posted here at the appropriate time. Emailed photos must be sent to Kris by (TBA).  If mailed, they must arrive by (TBA).

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

The Older Siblings Outing will be to (TBA).  The cost is $(TBA) which includes transportation, a T-shirt and Lunch.  See the schedule for loading and return times.

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 Kayse Whitaker at 619 William St, Kalamazoo, MI 49007

On Thursday, child care will be provided as detailed in the schedule – please refer to that for times and places.

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 to open the form.

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


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