SOFT Virtual Conference 2021

"Lean on Me!"

The 2021 SOFT “Virtual Conference” is right around the corner. We have several events and webinars scheduled including our “Professionals Only” webinar series. The schedule for all webinars is below and each entry includes a link to register for that webinar which will be activated once registration opens.

All events with the exception of the Mom’s and Dad’s groups will be recorded and available for replay. The Live stream of the Professionals Only series is intended to be limited to medical professionals. Those webinars will be available to all for replay.

Location: ZOOM online
Dates: Monday, July 19th - Sunday, July 25th
Cost: FREE

How It Works

Find the event or webinar you want to join and click 'Register' to register for the event. On that date and time just follow the link and join the event. It's that simple.

Medical Professionals Webinar Series

Professionals Only

Full Conference "At a Glance" Calendar
This download will give you a one page calendar "at a glance" schedule of all conference events.

Professionals Series Brochure and Schedule
Download a copy of the full schedule of events designed specifically for Medical Professionals. Includes schedule and presenter bios.

Monday July 19, 2021
10:00 – 11:00 am CT

Spectrum of Epilepsy in Trisomy 18 Syndrome

Dr. Agatino Battaglia, MD, DPed, DNeurol
Professionals Only

Monday July 19th, 2021
1:00 pm – 2:00 pm CT
Interdisciplinary Care of Children with Trisomy 13 and 18

Dr. Nicole Birge, MD
Medical Director of the Neonatal Intensive Care Unit at Children’s Omaha

Dr. Lois Starr, MD, PhD
Program Director for the Medical Genetics Fellowship
Medical Director for the Munroe-Meyer Institute for Genetics and Rehabilitation
Professionals Only

Tuesday July 20th, 2021
5:00 pm – 6:00 pm CT

Congenital Heart Surgery in Trisomy 13 and 18: An Update and Future Directions

Dr. Katherine Kosiv
Professionals Only

Wednesday July 21th, 2021
3:00 pm – 4:00 pm CT

Perspectives on the Care of Children with Trisomy 18/13

John C. Carey, MD, MPH, FAAP, FACMGG
Professionals Only

Thursday July 22nd, 2021
3:00 pm - 4:00 pm CT
Newborn Airway Evaluation and Mandibular Distraction in Trisomy 18

Glenn E. Green, MD
Professor, Department of Otolaryngology-Head and Neck Surgery
Professionals Only

General Conference Events and Webinars

Keep an eye on this page for updates or additions to the schedule!

General Sessions Brochure and Schedule
Download a pdf copy of the full schedule of events with descriptions and bios.

Monday July 19th, 2021
4:30 pm - 5:30 pm CT
Aquatic Therapy

Briana Demars OTA

Monday July 19, 2021
7:00 pm - 8:00 pm CT
Welcome to Conference and Parade of Stars

Join us for an evening of fun! We will be kicking off our 2nd Virtual Conference "Lean on Me" hearing from our SOFT Founder - Kris Holladay and SOFT President - Barb VanHerreweghe. We will also be showing off our beautiful kids in the Parade of Stars! This is an event you do not want to miss - we may have some fun and surprises!

Tuesday July 20th, 2021
11:00 am - 12:00 pm CT
Fitting, Adjusting and Modifying Mobility Equipment - Strategies for Adults and Children with Trisomies

Michael J. Workman PT C/NDT

Tuesday July 20th, 2021
3:00 pm - 4:00 pm CT
Trisomy 13/18 - The Basics

Dr. John C. Carey

Wednesday July 21th, 2021
10:00 am - 11:30 am CT
Art Therapy

During this session you will create an art project called "Face the Sun."

The following is a list of the supplies you will need for this art project. NOTE: if you signed up for this even by July 14th a supply kit i this is what you will need to participate:

  • One 1-ounce package of white Model Magic
  • small paper plate
  • small wooden craft stick
  • plastic knife and fork
  • gold acrylic paint
  • small sponge
  • a string for hanging
  • tissue

NOTE: if you signed up for this event by July 14th and you live in the US, a supply kit has been shipped to you.

Holly Garce
Art Therapist, MS, ATR

Wednesday July 21th, 2021
1:00 pm - 2:00 pm CT
Lean on Us: An Overview and Review of TRIS Project Activities

Deborah A. Bruns PhD
The Tracking Rare Incidence Syndromes (TRIS) project seeks to increase the knowledge base on rare incidence trisomy conditions, and to make this information available to families and interested educational, medical and therapeutic professionals.

Wednesday July 21th, 2021
6:00 pm - 8:00 pm CT
SOFT Board of Directors Annual Meeting

**Board Members Only**

Thursday July 22, 2021
10:00 am - 11:00 am
Kangaroo Kids

Michelle Pikel
Kangaroo Kids came about after Ellie, Emery, and Bodey’s cousin, Olivia, was diagnosed with Down syndrome at 12 weeks into her mom’s pregnancy. Ellie, Emery, and Bodey wanted to do something to support their aunt and uncle with Olivia’s impending care. With hundreds of miles separating them from their soon-to-be cousin, they decided, with their mom's assistance, to create a medical notebook for Olivia’s parents, so they could keep all of her medical information in one place.

Thursday July 22th, 2021
1:00 pm - 2:00 pm CT
Supplemental Needs Trust

Daniel A. Kautz
Daniel A. Kautz is a Registered Investment Representative with investment experience since 1999. Building and maintaining client relationships is Dan’s top priority.
Due to personal life experience, Dan focuses a portion of his practice on funding and managing Supplemental Needs Trusts and works closely with others in the field.

Thursday July 22th, 2021
5:00 pm - 6:00 pm CT
Finding Solutions: Managing Photosensitive Seizures, Light Sensitivity and Ocular Health

Dr. Steven Cantrell, OD

Thursday July 22, 2021
7:00 pm - 8:00 pm CT

State Representatives (Chapter Chair) Meeting

Current and prospective State Representatives are invited to join us to hear about changes to the program and collaborate to better serve our communities.

Friday July 23th, 2021
10:00 am - 11:00 am CT
Finding Words for our Grief

Cora Welsh, M.A., CCLS
Rev. Matt Norvell, DMin., M.S., B.C.C. Pediatric Chaplain

Friday July 23th, 2021
7:00 pm - 8:00 pm CT
SOFT Friends Video Premiere

Join us for the Premiere of the Annual
Kari Holladay "SOFT Friends" Video
and "SOFT Quilt" Auction.

Saturday July 24th, 2021
12:00 pm - 2:30 pm CT
Mom’s Only Group
The moms only group is a place to connect with other moms and have deeper discussions in a completely safe, judgement free environment. This session will not be recorded for later viewing.

Barb VanHerreweghe, Kelly Hernandez & Terre Krotzer

Saturday July 24th, 2021
3:00 pm - 5:00 pm CT

Dad’s Only Group

Lead by Jamie Lint and Josh Bradley

Saturday July 24th, 2021
7:00 pm - 8:00 pm CT
SOFT Angel Candle Lighting Remembrance Ceremony

We welcome everyone to join us for the Candle Lighting Ceremony in memory of our SOFT Angels. Submit your angel's name and photo by July 10th to be included in the ceremony. If submitting your angel's name you must also register for the webinar to be able to access the live Zoom event.

Sunday July 25th, 2021
1:00 pm CT
SOFT Virtual Conference - Lean on Me - Closing Remarks

Led by Josh Bradley

SOFT values education to empower families and professionals through the Trisomy journey. To help us realize our goals, we are bringing the 2021 Virtual Conference to you free of charge. SOFT is a 100% volunteer run organization. Your donations help us to bring you more great events like this.

SOFT is excited to announce our first virtual Run Walk Roll!

Do you want to help spread Trisomy Awareness? Do you like winning prizes? Do you want to help support an organization that brings you great events like the virtual conference? Get your team together and let people know that you arerunning, walking, or rolling for SOFT!

Click the button for full details and to register.

It wouldn’t be conference without a conference shirt! Time is running out to order. If you have not yet ordered your conference shirts there is still time to order.

By request we have even designed a T-shirt that you can wear while you are out on your Run, Walk or Roll! We want to see your photos. Please post them to the SOFT FB page using the hashtags: #SOFTRunWalkRoll #SOFTVirtualConference and #LeanOnSOFT.