2015 Conference (Salt Lake City)

The Support Organization for Trisomy 18, 13
and Related Disorders (SOFT)
Welcomes You to its 29th International SOFT Conference
in Salt Lake City, Utah
July 8 – 12, 2015
Conference Contact: softofutah@aol.com
<< Click a button, below, for: >>
Registration begins 3/1/2015 Conference Donation Wish List
Balloon Celebration Form
About Salt Lake City... Salt Lake City is full of unexpected surprises and brims with history, art, culture,
entertainment and recreation - all in a beautiful location at the foot of Utah's Wasatch Mountains. It
combines the amenities of a large metro area with the opportunity to take advantage of year round
outdoor recreation within minutes in every direction. An attractive, safe, and growing city, Salt Lake
offers unequaled views, a thriving economy, exciting nightlife, remarkable history, the warm hospitality
of a small western town, and *The Greatest Snow on Earth, TM*. Salt Lake is an incredible destination
for patrons of the performing arts with: Ballet West, Utah Opera Company, Ririe-Woodbury Dance
Company, Repertory Dance Theatre, Mormon Tabernacle Choir, and The Utah Symphony. Numerous
theater groups and over twenty art galleries are within minutes of Salt Lake's downtown hotels.
Salt Lake is located in northern Utah and sits in a large valley between two mountain ranges, the
Wasatch on the east side and the Oquirrhs to the west. Salt Lake is the home of the world-wide
headquarters of the Church of Jesus Christ of Latter Day Saints, the Mormons! Getting to Salt Lake has
never been easier. All major airlines fly into Salt Lake, so you can get here in no time. Half of the U. S.
population is located within a two and a half hour flight from Salt Lake, and two major interstate
highways, I-15 and I-80, intersect in Salt Lake City. Click here for more information about Salt Lake City.
The conference will be held on the campus of the University of Utah and the grounds of Historic Fort
Douglas. Camp Douglas (later renamed Fort Douglas) was established in 1862 as a small military garrison
for protecting the overland mail route and telegraph lines. The Fort was officially closed in 1991, when
most of the buildings were turned over to the University of Utah. A small section of the Fort is still used
by the Army Reserve and includes the Fort Douglas Military Museum.
Conference Overview – Register before June 1, 2015
<< Website Conference registration begins 3/1/2015; hotel registration is available now >>
Hotel: The Conference will be at the University of Utah’s Guest House and Conference Center on the
grounds of Historic Fort Douglas. (www.universityguesthouse.com) The hotel was built for the 2002
Winter Olympics and has since been expanded to now include 180 rooms, more meeting space, and a
larger lobby with more gathering areas. Reservations can be made by calling 1-888-416-4075 and asking
for the SOFT rate. Reservations should be made by June 1st. Please note: The hotel reservation and
the conference registration are separate reservations - both must be made. Call the hotel for the
room reservation and register for the conference using this link to the website’s conference
registration form (active after March 1st). Each room includes access to free Wi-Fi, a refrigerator, and a
microwave. There is access to laundry facilities on-site as well as a fitness room. The room rate is $109
per night.
Traveling by air? - Salt Lake City Airport Information. Click here for in-city transportation information
– note the University of Utah pdf. Car rentals are available at the airport. The hotel is also on the Trax
line with one transfer from the airport.
Wednesday Evening Ice Cream Social: Attendees are invited to the Douglas Ballroom and Patio
from 7:30-9pm for a casual meet-and-greet activity. Cold Stone Creamery will provide several tasty ice
cream and fruit sorbet selections with a variety of toppings. It’s a good way to unwind and to mingle and
connect with old and new friends.
Thursday Workshops, from 9:00 to 4:00: When registering, select those which you want to
attend so we can ensure adequate seating.
Thursday Evening, 6-10pm: SOFT presents the Opening Banquet and Silent Art Auction to be held
at Rice-Eccles Stadium Tower. The Stadium has an amazing view and was the home of the Opening and
Closing Ceremonies of the 2002 Olympic Winter Games. The dinner will also feature the Parade of
“Heroes”, the SOFT Video Montage and a special guest speaker.
Silent Art Auction: As part of dinner, we will display art work done by our SOFT Kids and SOFT Sibs.
The art will be auctioned as part of a silent auction and the proceeds will benefit the Joey Watson Fund.
Parade of “Heroes” in memory of Zion Lint: While usually called the “Parade of Stars”, this year
we are celebrating heroes. There are so many heroes in our lives and at this SOFT Conference, the first
set of heroes we will celebrate is our children. Each SOFT child will have the opportunity to be escorted
down the red carpet and highlighted as one of our heroes. If the parent is another type of hero, such as
a nurse, a doctor, former military member, etc. and would like to wear the uniform while escorting your
child, we would welcome it.
Thursday Keynote: We will be pleased to hear from Kara McHenry, the founder of Prayers for
Corbin. In the short period of her son’s life in 2013, Kara created a Facebook page to allow people to
follow his journey. The page now has over 500,000 followers. She will talk about her experience with her
son and her experience sharing his journey with half a million people across the world.
Friday Keynote: Dr. Joan Sheets of Primary Children’s Hospital will address us concerning her
“Rainbow Kids” group, the pediatric palliative care program. Rainbow Kids is a consolation service
available to any child and their family who is experiencing a life-threatening illness or disorder. The
program helps the child and family deal with feelings, symptoms, and concerns that may be confusing
and overwhelming. She will discuss the often confusing classification of “palliative care” and what it is
and isn’t.
Remembrance Outing: An outing for families who have lost their children. Our outing this year will
be at Red Butte Garden on the University Campus. Red Butte has over 100 acres of natural gardens and
walking paths that display the regional horticulture. We will be pleased to have a short program at the
gardens followed by time to wander on your own or with the garden docents. Our outing will end with
lunch that can be eaten at various beautiful locations within the garden.
Friday Medical Clinics: Pediatric Medical Clinics for families with a living SOFT child will be held at
the new medical clinics at Primary Children’s Hospital. Please sign up early using the registration form,
as soon as registration opens on March 1st, as these fill up very fast, and indicate your need for busing to
the clinics on the registration form.
Feeding Difficulties
Eye Care
Friday’s Chaperoned Sibling Outings:
While the clinics/remembrance outing are going on,
Younger Siblings (age 5-7) can go to the Discovery Gateway Children’s Museum. This $25 outing includes
a great super hero adventure, exciting museum activities and lunch, from 9:30 am to 2 pm. Older
siblings (8+) will go to the Lagoon Amusement Park, where lunch is included for $30. Chaperones,
transportation, lunch and T-shirts will be provided. This outing will run from 9:30 am until 5 pm.
Children must be pre-registered - please indicate on the conference registration form the names, ages
and T-shirt sizes of the children attending. If the parents would like to also attend Lagoon at any point
during the day, discount tickets may be purchased at our group rate.
Friday Night Outing:
Family Night Out. This is an opportunity for your family to explore our
wonderful city. A short ride on Trax will get you into the heart of the city. Enjoy a variety of restaurant at
City Creek Center or Gateway Mall. Family Open Swim is also available for around $5 per person at the
brand new George Eccles Student Life Center on Campus (http://studentlifecenter.utah.edu/). It is a 3
minute walk across the bridge. Take your children or leave them at the hotel in the child care room,
which will be offered until 10 PM.
Saturday Morning Events: After breakfast, meet in the Douglas Ballroom for the SOFT Business
Meeting, where we will elect the new board of directors and conduct some business affairs with the
general membership. This meeting will also feature the presentation of the Erin Jorgenson Scholarship
recipient. The meeting will conclude with Family Share Time, where members are invited to share a
moment about their child.
Saturday Morning, 10-11am; SOFT Stroll for Hope: The SOFT Stroll for Hope, in memory of
Jonathan Cook, is an annual conference fundraiser. Prizes for best dressed family, most pledges raised,
and best decorated wheelchair or stroller, will be awarded by the Cook Family. Meet in front of the
hotel for our walk around the grounds with many cheering us on. You might even see some newspaper
and TV crews there too, so come dressed in your favorite team attire. The Cooks will be Jonathan’s Fans,
all decked out in rainbow, of course. For questions, please email Cindy Cook at newbeg08@aol.com.
Make your pledge page and get started by clicking here. (note: this link is not yet active).
Saturday Picnic and Balloon Celebration Information:
These will be from 12-4pm on
Saturday, on the Fort Douglas grounds, which is a 2 minute walk from the hotel. Be sure to wear your
badge and arm band! SOFT’s Annual Balloon Celebration, in memory of Ryan Cantrell, is the special
event held each year at the picnic, to pay tribute to our SOFT children who have received their angel
wings. Balloons, with your child’s name attached, will be ready for you. Parents need not attend the
conference to include their child’s name and a balloon in the ceremony. To obtain a balloon, please
complete the Balloon Release Form, which can be accessed from the button on the first page of this
conference brochure, or from the website at this direct link.
Memory Room:
A special quiet room will be provided for sharing the memories of our Angel
Children, from 8am to 10pm Wednesday through Friday and 8a – 8p on Saturday. Bring photos, photo
albums, scrapbooks or any other mementos to share and be sure to label your items with your name
and contact information.
Auction: Will be held on Saturday evening at 6:30pm in the Douglas Ballroom. Please bring items to
donate as well as cash, checkbook and credit cards! Turn in auction items when you register with SOFT
at the hotel (Alpine Room) or send them to: Debbie Dye, 2696 E. Verona Circle, Holladay, Utah 84117.
The evening will feature a dinner of pizza, salad, and other refreshments. We love auctioning handmade
items, baskets of treats from your area, home décor, art work, SOFT-related items, jewelry, gift
certificates, and signed sports memorabilia. It’s a perfect time to regift; we won’t tell!
Childcare: While you attend conference events, childcare is available in the City Creek and/or
Bonneville rooms. Please check each day’s schedule to see when it is open, and don’t forget to bring
any special items your child will need, such as nap blankets/pillows or special foods and medications.
Need Financial Assistance to Attend? The Conference Assistance Fund, in memory of Joey
Watson, provides a limited amount of financial assistance to those needing assistance to attend the
conference. Click here to apply.
2015 SOFT Video Montage:
Be part of the "SOFT Friends" DVD, in memory of Kari Holladay,
honoring all our children through pictures and music! Please submit 3-4 pictures per child. Include your
child’s name and diagnosis, parent names, birth date & death date (if applicable), and if you are
attending the conference. You don’t have to attend in order to include your child’s photos. Please
submit your pictures by June 1th, 2015 (earlier is preferred). Photos received after June 1th cannot be
incorporated in the video. Pictures will not be returned, so please do not send your original, one of a
kind picture!
You can share your photos in three ways: 1) Upload pics at http://www.softannualvideo.com 2) Email
pics to Kris at holladay2go@hotmail.com (include SOFT in subject line to preclude its going to a junk file)
or 3) Mail to: Kris Holladay, 1522 E. Garnet Avenue, Mesa, AZ 85204. ALL varieties of photos are
appreciated: touching, funny, sweet, silly, heartwarming, accomplishments and your SOFT child with
siblings & families, etc. SHORT videos (1-2 min) are great! Send video, YouTube link or questions to Kris’
email. Available after February 1st, 2015
Conference Registration: The registration form is available here, after March 1st, 2015. Full
conference adult (age 12+) registration is $135 each and for children aged 5-11 is $85. SOFT children
and their siblings under age 5 are free. The fee for the picnic only, for ages 5+, is $30 - under 5 are free.
Other event costs are listed on the registration form. Registration closes on June 1st so register as soon
as registration opens. There is a $25 per person late fee after June 1st, as late registrations affect our
contracts. The registration fee includes breakfast every day, the ice cream social on Wednesday, and all
meals on Thursday through Saturday with the exception of dinner on Friday.
Breakfast every day includes eggs, bacon or sausage, pancakes, pastries, cereal, juices, and Starbuck’s
Coffee. Ice water and coffee will be available all day in the lobby and cookies are available daily at 4 pm.
SOFTwear: The style and sizes of SOFTwear (T-shirts) offered are listed on the registration form.
Please order when registering, so that we will have what you want, when you arrive. SOFTwear orders
must be placed by midnight, June 1st, along with the registration form. Some extra shirts in common
sizes might be available at the conference, but don’t depend on it. Order your shirts and wear the logo!
The following sizes can be ordered on the registration form so prior to completing the form, decide what
you want to order:
Youth 2-4, XS
Youth 6-8, S
Youth 10-12, M
Youth 14-16, L
Adult XS
Adult S
Pricing: See registration form for pricing.
Adult M
Adult L
Adult XL
Adult XXL
Adult XXXL
Session 1: 9:30-10:30
1a – CPR 1
1b –Pulmonary/Respiratory Therapy
1c –Digital Scrapbooking
1f-Insurance Issues
Session 2: 10:45-11:45
2a – CPR 1
2b –Trisomy 18 and 13
2c –Related Disorders
2d-Angel Children
2e-Insurance Issues
Session 3: 1:30 – 2:30
3a - CPR 2
3b –Hosting a Conference
3c –Chiropractic for Parent and Child
3d – Sibling Panel
3e- Physical Therapy
Session 4: 2:45 – 4:00
4a – Mom’s Only
4b – Dad’s Only
The 2015 Conference Committee
Chair Families: Dye Family (Jim and Debbie, Chelsea Dye Woolley and Kimber Dye Walton), Steve and
Raquel Wagner
Members: Valorie Dodart, James and Lisa Hooper, Knobel Family (Ken and Julie, Kira, Kourtni), Julie
Massey, Rebekah Peterson, Julianna Snell, Watson Family (Tim, Pam, Kindra and Laurel).
Conference Hotel and miscellaneous information about Salt Lake City:
The University’s Guest House and Conference Center, where the conference will be held.
110 South Fort Douglas Boulevard, Salt Lake City, UT 84113
More information about the Guest House. More information about the Conference Center.
Salt Lake City Information
Conference Schedule
Wednesday, July 8
6:00 - 9:00am Breakfast Buffet in Lobby and overflow
seating in City Creek.
8:00am - 5:00pm Board of Directors Meeting Douglas West
(Childcare- Board Children, City Creek)
8:00 - 10:00pm Memory Room open, Foothills
- 5:00pm Registration open, Alpine
Ice Cream Social, Douglas Ballroom
Thursday, July 9
6:00 - 9:00am Breakfast Buffet in Lobby and overflow
seating in City Creek.
8:00 - 5:00p, Registration open, Alpine
8:00 - 10:00pm Memory Room open, Foothills
8:30 - 9:00am New Family Meet and Greet
Douglas West
9:30-10:30 am Workshop Session 1
10:45-11:45 am Workshop Session 2
9:00 - 12:00
Childcare open. Bonneville and City
Lunch-Pickup on Officer’s Club Patio
Chapter Chair Lunch-Douglas West
Childcare open. Bonneville and City
1:30-2:30 pm
Workshop Session 3
2:45-4:00 pm
Workshop Session 4
6:00 - 10:00pm Welcome Dinner/Art Auction –Rice
Eccles Stadium Tower
Dinner speaker: Kara McHenry, Prayers
for Corbin
The Parade of “Heroes” in memory of
Zion Lint
2015 Video Montage
DJ and Dancing
Friday, July 10
6:00 - 9:00am Breakfast Buffet in Lobby and overflow
seating in City Creek.
8:00 - 10:00 pm Memory Room open, Foothills
9:00am – 4:00pm Sibling Childcare open for families
attending clinics or Remembrance outing. City Creek.
8:00 - 5:00pm Registration Open, Alpine
9:30 - 5:00pm in Lobby: Older Sibling Amusement Park
9:30 2:00pm in Lobby: Younger Sibling Outings to
Discovery Gateway
Friday, July 10 (continued)
9:00-10:00 am Rainbow Kids Palliative Care
10:30-1:00 pm Remembrance Outing and Lunch-Red
Butte Gardens
11:30-1:00 pm Lunch at Primary Children’s Hospital for
Clinic Families
Lunch for all other attendees-Peterson
6:00-10:00 pm Family Night Out on your own
Childcare available in City Creek until 10
Saturday, July 11
6:00 - 9:00am Breakfast Buffet in Lobby and overflow
seating in Douglas Ballroom
8:00 - 8:00pm Memory Room open, Foothills
9:00 - 10:00am Erin Jorgenson Scholarship Fund
Business Meeting and Board Elections
Douglas Ballroom
10:00-11:00 am SOFT Stroll for Hope, Front of Hotel
12:00 - 4:00pm SOFT Picnic, Officer’s Circle
6:00 -10:00 pm SOFT Auction-Douglas Ballroom
Pizza, Salad, and snacks provided
Sunday, July 12
6:00 - 10:00am Breakfast Buffet in Lobby.
 TBA = To be announced
Pulmonary/Respiratory Therapy
Digital Scrapbooking
Insurance Issues
Trisomy 18 and 13
Related Disorders
Angel Children
Hosting a Conference
Chiropractic for Parent and Child
Sibling Panel
Physical Therapy
Mom’s Only
Dad’s Only