Conference Brochure Madison 2017

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Conference Registration is Closed     Balloon Release Requests have Closed!     Donate to the 2018 Conference!

Click a button above to register, request a balloon release or to donate to the conference.  We recommend printing this brochure before opening the registration form.
Early Bird registration closed at midnight June 5th, but you can still make a late registration – so click the Registration Button above.


hotel-locationConference Hotel:
Madison Concourse Hotel and Governor’s Club
1 West Dayton St, Madison, WI 53703,  Switchboard = 608-257-6000
The rate for July 18-22 is $144 a night – This special conference rate is only good for reservations made through June 5th, after which the rate might rise!  The rate includes 24 hour cancellation, parking, and a 15% discount at hotel outlets like The Bar, Circ and Starbucks.  Don’t forget to make your conference registration, separately from this hotel reservation!

The Clinics will be held at the University of Wisconsin’s Waisman Center,  1500 Highland Ave, Madison WI 53792.
The scheduled clinics include:  Cardiology,   Neurology,    Genetics, Occupational Therapy, Developmental Pediatrics, Pulmonary, Orthopedics, Feeding/Nutrition, GI, Communication Aids and Systems, Audiology, ENT and PT.
In addition, a special needs car seat specialist and seat samples will be available on a walk-in basis.


Madison, WI information

If arriving in the Madison area early, please enjoy the city’s natural wonders. Miles of biking and hiking trails weave through the city, and out to the country fields of south central Wisconsin. Less than a 30 minute drive from the hotel is Governor Nelson State Park. Miles of trails weave through this beautiful park along the shores of Lake Mendota.  The popular Woodland Trail provides views of Native American effigy mounds.  If a visit with mother nature isn’t your idea of a leisurely day, take the afternoon to shop, dine, and play in downtown Madison. The ever popular State Street is an experience every visitor to Madison will enjoy.

airport_sign_199032Madison’s Dane County Regional Airport is served by American, Delta, Frontier and United Airlines.  Click the link to explore the airport website.

Plan your trip!  Here’s a link to MapQuest.
It is 990 miles, just a day and a half drive, from Dallas, TX to Madison.  It’s 950 miles from Raleigh, NC to Madison,  1980 miles from Los Angeles (you might want to fly this route!),  600 miles from Pittsburgh and 940 from New York City.  Approach Madison from the South on Interstate 39, or from the East on I-94.

 American       Delta       United       Frontier


T-Shirts, Hooded Sweatshirts and 1/4 zipper pullovers with the conference logo will be available for purchase on the Conference Registration form. The T-shirts will have the Conference Logo on the front and a Waisman Clinic logo on the back. The Sweatshirts and pullovers will be styled as the illustration here indicates.

Registration Cost:
 Adults (age 12 and up) – $135 (Early Bird registration; $160 after June 5th),  Children (5 and up) – $85, Children below age 5, and SOFT children – no charge.  The Joey Watson Conference Assistance Fund provides a limited amount of financial support to assist needing families with conference attendance expenses and donations to this fund are always welcome.  The Joey Watson fund application form can be found here.  Note:  Joey Watson grant applications are now closed; the deadline was May 15th.

Child Care will be available Thursday morning and afternoon to allow workshop attendance by parents, and on Friday afternoon (for Remembrance Outing attendees only).  Sign up for this on the registration form.

Rick Guidotti, well-known photographer from Positive Exposure, will photograph our kids at the conference, and put them into a Flickr photo stream for us.  Details about time and place will be in the Conference Book you will receive at check-in.

SOFT Auction – Saturday night; light snacks provided; bring your wallet!   If you have items to donate for the auction, please send them to:  James and Kari Adamson,  77 Arvey Lane,  Fond du Lac, WI 54935.  With our conference theme being, “Oh The Places You Will Go,” we thought it would be fun if you would like to create a basket to represent your state or country for the silent auction.  We will definitely have one to represent Wisconsin!

The Conference Schedule:

Check into the Madison Concourse beginning at 3pm.  Then, go to the 2nd floor “Wedding Office,” which is being used as the SOFT Conference check-in room, and pick up your Conference Bag.   The hotel floor plan, at the end of this web page, shows room locations.  The rooms where each event will take place will be identified in the Conference Book you will receive when you check in.  Sign up for the final list of workshops when you check in.

Wednesday, July 19
8:00am – 5:00pm
 Board Meeting for Board Members only.
7:30pm – 9:00pm Ice Cream Welcome Social.   Attendees are invited to an evening of relaxation, meeting new friends and reconnecting with old ones. We will have ice cream and enjoyment for all!

Thursday, July 20–
– Breakfast
9:30-4:45 – Workshops: Subjects and times as listed below.  Room locations and updated Workshop information will be provided when you check in after arriving.  Other sessions being considered may include a memory-making project for angel parents,  massage, essential oils or other.  Please check back for updates.

1a. TRIS Project : Year in review (June 2016-June2017) (Debbie Bruns) – This session will provide an overview of activities of the Tracking Rare Incidence Syndromes (TRIS) project during the past year including responding to parent queries, developing online modules for families and medical professionals, and continued outreach efforts.  In addition, an article based on analysis of TRIS project data was published in a special issue of the American Journal of Medical Genetics Part C in September, 2016.  Suggestions for future data analyses are welcomed and sharing is encouraged.

1b.  Planning for older kids:  A lawyer will help explain special needs trusts and guardianship.  This session will be particularly helpful for those having teenage children.

1c.  Jewelry Making:  Dins Designs will help you create your own piece of jewelry.  The cost for this session is $40, paid on the registration form.  You will be creating a unique memory piece at conference.  She will then take it to fire and the finished product will be mailed to you.  You can check out her work at: or on ETSY at

1d.  Occupational and Speech Therapy  An OT and ST from the Waisman Center will discuss switch access to iPads/computers and augmentative and alternative communication options for our children..

Siblings Activity with Jamie Lint (ages 11 & up)

2a. Trisomy 18 & 13:  Dr. Carey will talk about trisomy 18 & 13.

2b.  Music Therapy:  Research has shown that people from all ability levels benefit from making music.  Finger plays, songs, playing instruments and movement enhance your child’s development.  This workshop will provide ways to incorporate music in your child’s life through the use of different techniques and activities.

3c.  Hippotherapy:  Hippotherapy is a physical, occupational or speech and language therapy treatment that utilizes equine movement. In each hippotherapy session a specially trained occupational, physical or speech therapist properly positions the client on the horse, analyzes the client’s response and directs the horse’s movement.

4d.  To be determined.

A Siblings Panel (with Cindy Cook) will also be held in the child care room during the 10:30-11:45 time slot.  Having a sibling with trisomy presents some unique experiences and perspectives growing up.  Come and listen as siblings going through this journey share the lessons they have learned or struggles they have had.  Come with questions or simply listen as they share their unique journey.  Whether their trisomy sibling is holding a hand or now only their heart, their journeys are so powerful.

12:30-1:30 – LUNCH/Chapter Chairs Lunch

4a. Hosting a SOFT Conference: Bring a SOFT Conference to your area! Come and learn how you can host a future SOFT Conference in 2019 and beyond. Questions welcome!

4b.  Vision, light sensitivity & seizures:  Dr. Steve Cantrell will discuss how indoor and outdoor light affects your child and seizures.  Information on how to correct this newer photosensitive issue.  Benefits for mom and dad too!

4c.  CPR Training.

4d.  Physical Therapy, presented by Mike Workman.

5a. Dad’s Only Forum:  Everyone knows that men and women cope differently.  As men, you will discuss among each other your joys, your trials, and everything discussed stays in this room.
5b. Mom’s Only Forum:  Come and sit, talk or simply listen to Mom’s who are going through this Trisomy Journey.  Men and women cope very differently.  This is a place to share your fears, your stories and your tips on how you, as a Mom, are coping.  We talk, we laugh, we may even cry.  It is a very special group, that has become a conference favorite.  Whether your trisomy child is in your arme or in your heart, this workshop is for you!
6:00 – 11:00pm Join us for the Welcome Dinner which will include the annual SOFT Parade of Stars and the Children’s Candle Ceremony. We will hear from our Keynote Speaker, Dr. Martin McCaffrey, followed by an evening of music, dancing and celebration.  The following dinner options will be available (you will need these OPTION NUMBERS when completing your conference registration):

Option 1:  Wild Mushroom Ravioli with sauteed portabella muchrooms, tomato basil sauce, pesto & parmesan cheese.
Option 2:  Lemon Herb Chicken Breast, skin-on, mashed potatoes, asparagus, baby carrots, madiera sauce
Option 3:  Red Wine Marinated Grilled Top Sirloin, sour cream mashed red potatoes, shallot red wine reduction, asparagus and baby carrots
Option 4:  Kids Menu Only:  Chicken tenders, mac n’ cheese, carrots, celery sticks, ranch dressing and milk.

Friday, July 21
7:30-9:00am​ Breakfast

9:00am  SOFT’s annual Stroll for Hope.  Decorate your wheelchairs and wear your best outfits as we enjoy this “awareness” event.

1:00 – 5:00pm​  Medical Clinics, for families bringing a SOFT child to conference. The Clinics will be held at the University of Wisconsin’s Waisman Center,  1500 Highland Ave, Madison WI 53792.  Please sign up early on the conference registration form, as these fill up fast. Don’t forget to indicate your need for busing on the form! Meet outside the lobby doors at your assigned time to catch the bus. Be sure to indicate your lunch choice BY NUMBER on the conference registration form.   The lunch choices for Clinic Attendees AND the Remembrance Outing attendees are as follows:

Option 1: Turkey & Provolone Sandwich on focaccia bread, pesto mayo, lettuce, tomato
Option 2:  Ham & Swiss Sandwich on focaccia bread, dill mayo, lettuce, tomato
Option 3:  Cranberry Creek Signature Salad – chicken, mixed greens, dried cranberries, mandarin oranges, red onion, pecans, cranberry balsamic dressing
Option 4:  Vegetarian Hummus Wrap – roasted red pepper hummus, herb flour tortilla with cucumbers, tomatoes, mixed greens, onion

A list of the medical clinics being offered this year follows (you will need the clinic NUMBERS when completing the registration form):
1-Cardiology,   2-Neurology,   3-Genetics,  4-Occupational Therapy,  5-Developmental Pediatrics,  6-Pulmonary,  7-Orthopedics,  8-Feeding/Nutrition,  9-GI,  10-Communication Aids and Systems,  11-Audiology,  12-ENT,  and 13-PT

1:00 – 4:30pm​  Remembrance Outing, for families who have lost children, at Olbrich Botanical Gardens.  In addition to the usual summer exhibitions, the  Blooming Butterflies exhibit will be available in the Conservatory.  Meet outside the lobby doors at the time specified in your conference book, for transportation to the gardens.   Be sure to indicate your lunch choice on the conference registration form – see the choices in the Clinics section, above.

12 – 4:00pm​  Older Siblings (age 8+) Outing at Little Amerricka Amusement Park, 700 E. Main St., Marshall, WI.  This is a 1950s-style amusement park with restored classic rides, a wooden roller coaster & a kiddieland for tots.  A T-shirt and lunch are included in the $35 cost.  Transportation time and location are in your conference book.

12 – 4:00pm Younger Siblings (age 5 – 7) Outing, Madison Children’s Museum and Babcock Creamery.   The Children’s Museum contains exhibits on the arts, sciences, history, culture, health, and civic engagement.  The Babcock Creamery is part of the University of Wisconsin.  A T-shirt, lunch and ice cream are included in the $25 cost.  Transportation time and location are in your conference book.

Friday evening:​  Feel free to enjoy a Family Night Out with your family. This is an opportunity for your family to explore our wonderful city. There will also be an opportunity for individuals to stay in Friday night, and participate in a fun activity (details will be in your Conference Book)   A partial list of nearby restaurants can be found here.

7:15 PM– If baseball is your thing, take in a Northwoods League game between the Madison Mallards and the Wisconsin Woodchucks. Tickets for the game range from $8-$15. For those looking for a VIP experience, check out the Great Dane Duck Blind. This all-inclusive area   includes all you can eat and drink during the game. For $32/soda or $41/beer you’ll surely enjoy a night to remember. Visit​ for more information.

Saturday, July 22
7:30-9:00am​ Breakfast
8:00am – 9:00am – General Membership meeting to nominate and elect new Board Members.  We will show Kris Holladay’s SOFT Friends Video during the meeting – a must see for all attendees.  Kris Holladay needs your photos for the video!  Click this link to find out how to send your photos to Kris by June 5th.  Note:  photo submission is now closed.

9:45am​ – Begin boarding buses to Warner Park for the SOFT Picnic. The address of the Warner Park Community Recreation Center is 1625 Northport Drive, Madison WI (a 5.2 mile drive from the hotel – about 15-20 minutes.)

10:15-3:15​ – SOFT Picnic and Balloon Celebration at Warner Park.  Be sure you have completed a balloon celebration form on the SOFT website, if you want a balloon to be released.

11:30am Picnic Lunch: Enjoy a traditional Wisconsin cookout – a Wisconsin tailgate!   The menu will include Wisconsin Beer Bratwurst, Cheeseburgers, Veggieburgers, Corn on the cob and fresh Fruit Salad, so bring your appetites.

1:30pm – Balloon Celebration at the picnic site

6:00-10:00 – SOFT Auction – light snacks provided; bring your wallet!   If you have items to donate for the auction, please send them to:  James and Kari Adamson,  77 Arvey Lane,  Fond du Lac, WI 54935.  With our conference theme being, “Oh The Places You Will Go,” we thought it would be fun if you would like to create a basket to represent your state or country for the silent auction.  We will definitely have one to represent Wisconsin!

Sunday, July 23
7:30-9:00am – Breakfast
9:00am – Non-Denominational Church Service

Here is a link to the hotel meeting room floorplan.