SOFT 2017 Conference Information


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Registration begins in about 3 weeks     Balloon Celeb Registrations in about 3 weeks     Donate to the Conference

Please note that this is an early version of the Conference Information –
check it frequently for updates!
We expect to open registrations and balloon requests in early March.


hotel-locationConference Hotel:
Madison Concourse Hotel and Governor’s Club
1 West Dayton Street, 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!
Our rate includes 24 hour cancellation, parking, and a 15% discount at hotel outlets like The Bar, Circ and Starbucks.  The hotel check-out time is 11:00.

The Clinics will be held at the University of Wisconsin’s Waisman Center,  1500 Highland Ave, Madison WI 53792.  The list of clinics to be presented will be made available soon.
Clinic 1 TBA
Clinic 2 TBA
Clinic 3 TBA
Clinic 4 TBA
Clinic 5 TBA


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


The Conference Schedule:

Wednesday, July 19 Check into the Madison Concourse (91 West Dayton Street) beginning at 3pm unless you have arranged an earlier check-in time.

8:00am – 5:00pm  Board Meeting for Board Members only.  Room location TBA
7:30pm – 9:00pm Ice Cream Welcome Social.  Room location TBA. Attendees are invited to an evening of relaxation, meeting new friends and reconnecting with old ones. We will have ice cream for all and we will be premiering the Kari Holladay SOFT Friends Video during the evening – a must see for all attendees.

Thursday, July 20
– Breakfast, location TBA
9:00-4:00 – Workshops (preliminary schedule is listed below – others TBD)
1a. TRIS Project – This session will provide an overview of activities of the Tracking Rare Incidence Syndromes (TRIS) project during the past 12 months, highlighting areas of data analyses and results and recently published articles. Dr. Deborah A . Bruns

2a. Genetics -The goals of the workshop are to describe the syndrome patterns of trisomy 13 & 18 and address the questions of the attendees. Dr. John Carey

3a. Vision, light sensitivity and seizures, New information on how indoor and outdoor light affects your child and seizures. Detailed handouts with information on how to correct this newly discovered photosensitive issue.. Benefits for Mom and Dad too. Dr. Steve Cantrell

12:15-1:15 – Lunch Break (Chapter Chair Luncheon)

4a. Hosting a SOFT Conference: Bringing SOFT Conference to your area! Come and learn how you can host a SOFT Conference in the future. Members of current and previous conference committees.

5a Dads Only – Sharing Workshop
5b Moms Only – Sharing Workshop
5c Siblings Only – Sharing Workshop

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, to be held in Pavilions A, G & D. We will hear from our Keynote Speaker, Dr. Martin McCaffrey, followed by an evening of music, dancing and celebration.

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

1:00 – 5:00pm​  Medical Clinics, for families bringing a SOFT child to conference, will be held at American Family Children’s Hospital 1675 Highland Avenue; Madison, Wisconsin. 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:
#1 Turkey & Provolone Sandwich on focaccia bread, pesto mayo, lettuce, tomato
#2  Ham & Swiss Sandwich on focaccia bread, dill mayo, lettuce, tomato
#3  Cranberry Creek Signature Salad – chicken, mixed greens, dried cranberries, mandarin oranges, red onion, pecans, cranberry balsamic dressing
#4  Vegetarian Hummus Wrap – roasted red pepper hummus, herb flour tortilla with cucumbers, tomatoes, mixed greens, onion

The medical clinics being offered this year are as follows:

(A list of Clinics will be provided as soon as they are agreed)

1:00 – 4:30pm​  Remembrance Outing, for families who have lost children, at Olbrich Botanical Gardens.  Meet outside the lobby doors at XXX (time) 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 Outing at ? (age 8+). Prices (TBA) will be discounted until May 31st at which time they will return to normal.

12 – 4:00pm Younger Siblings Outing, Madison Children’s Museum and Babcock Creamery (age 5 – 7). Prices (TBA) will be discounted until May 31st at which time they will return to normal.

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 (more details to follow.)   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 – Board Meeting  Location TBA

9:45am​ – Begin boarding buses to Warner Park for SOFT Picnic. The address of the park is 2930 N. Sherman Dr. (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.

10:30amSOFT Stroll for Hope: grab your costumes, decorate your wheel chairs and have fun! This year we will be walking at the beautiful picnic site.

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.

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