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SOFT CONFERENCE SCHEDULE
JULY 19 - 23, 2006 Friday, JULY 21 S UPPORT O
RGANIZATION F T
OR RISOMY
1 – 4pm Childcare available*
18, 13 AND RELATED DISORDERS
Wednesday, JULY 19 1:15 – 2:30pm Workshops - Session 3
A) Palliative Care/DNR - What does it mean July 19 - 23, 2006
8am - 6pm SOFT Board of Directors Meeting
(Childcare available for Board members’ to us? Chicago, Illinois
children*) B) Marriage Workshop Phone: 815-729-1860
2 - 5pm Registration and SOFTwear Sales C) Dental Issues SOFT (Support Organization for Trisomy 18, 13 and
D) Alternative Therapies
Thursday, JULY 20 Related Disorders) is a network of families and
2:45 - 4pm Workshops - Session 4
7:30 - 9am Continental Breakfast A) Gastrointestinal. Issues professionals dedicated to providing support and
8am – 5pm Registration and SOFTwear Sales B) Raising a Child with Disabilities understanding to families involved in the issues and
8am – 10pm Memory Room Open C) Advocating for Your Child –Family decisions surrounding the diagnosis and care in Trisomy
10 – 11am New Family Orientation Support Network 18, 13 and related chromosomal disorders. Support is
10 – 11am Scientific Symposium D) Making Memories provided during prenatal diagnosis, the child’s life and
“Perspectives on the Medical and Genetic E) TRIS – Tracking Rare Incidence after the child’s passing. SOFT is committed to respect
Aspects of Trisomy 18 and 13 Syndromes” Syndromes a family’s personal decision in alliance with a parent-
(Medical Professionals only; 4:15 – 5:15pm Dinner on your own
professional partnership.
Pre-registration required) 5pm – Midnight Childcare available*
11:15am Buses leave for medical clinics 5:15pm Buses leave for White Sox Game
NOON - 5pm Medical Clinics at Advocate Hope 6:30 – 11:00pm Optional Outing: Chicago White Sox vs. SOFT web site: www.trisomy.org
Hospital’s Ambulatory Care Center Texas Rangers
Childcare available at Hope Hospital for (Pre-registration required) About the conference
siblings. Lunch provided by Hope Hospital. Midnight Buses return from White Sox Game An annual conference is held by a host chapter for
(Pre-registration required) families and professionals from around the world in an
1 - 3pm Grief Workshop (Adults) effort to gather and exchange information, ideas,
Saturday, JULY 22
Sibshop: grief workshop for siblings (6-12)
7:30 - 9am Hot Breakfast Buffet scientific data, and share family experiences. Chicago,
4 – 5pm Children’s Concert by Jim Gill th
Parent or childcare worker must
9:15 - 10am Video Presentation America’s Second City is proud to host the 20 Annual
10 - 11am SOFT Business Meeting International Conference. The Hilton Double Tree is
accompany child)
11:30am Buses leave for picnic located 20 miles west of downtown Chicago, 11 miles
6 - 10pm Welcome Dinner & Entertainment
NOON - 5pm Picnic and Ryan Cantrell Memorial
from Chicago O’Hare International Airport, 15 miles from
Balloon Celebration
Friday, JULY 21 5:15pm Buses return from picnic Midway Airport and just steps away from over 160
7:30 - 9am Hot Breakfast Buffet 5:15 - 6pm Dinner on your own stores, shops and restaurants at Oakbrook Center mall.
8 - 11am Registration and SOFTwear Sales 6 - 10pm Annual Auction
8am – NOON Childcare available* About Chicago
8am – 10pm Memory Room open Chicago invites you to discover its wealth of activities
Sunday, July 23
8am – 8:15am General Session
7:30 - 9am Continental Breakfast from lakeside tours to architectural explorations,
8:15 – 9am Kris Holladay’s Annual Video Presentation
9 - 9:30am Non-denominational Church Service symphony performances to dance recitals. Within the city
9am – 5pm Chair Massages
9:30 – 10am Closing Remarks you can find attractions that include a public fountain that
(Sign-up at Registration Desk)
9am – 4pm Sib Outing – Morton Arboretum (6-12) dances nightly throughout the summer, observation
9:15 – 10:15am Workshops - Session 1 (*Childcare does not include meals). decks atop some of the world’s tallest buildings, one of
A) Trisomy 18 and Related Disorders the last free zoos in the nation; and art featured indoors
B) Spiritual Workshop and outside. When it comes to museums, you can
For more Conference Information:
C) Neurology explore the gamut from ancient Greece to modern art,
D) Hand Casting with your Child Cindy Cook
815-729-1860 e-mail: MSW95@aol.com OR; life undersea to outer space. As for the theater, the
10:30 – 11:45am Workshops - Session 2
A) Trisomy 13 Mark & Jayne Wright offerings range from classic Shakespeare to
B) Introduction to Meditation and Yoga 309-726-1035 e-mail: jm.wright@verizon.net OR; improvisational comedy. Chicago’s newest attraction
C) Developmental Pediatrics visit our web site: www.illinoissoft.com Millennium Park is an adventure not to be missed. Your
D) Parent Panel for changes in our program. trip to Chicago is not complete without visiting “The
10:30am – 4pm Sib Outing – Centennial Beach (13+) Bean”. Finally, there are sport and recreational
NOON - 1pm Chapter Chair Luncheon opportunities as well as a Chicago favorite……Shopping!
NOON - 1pm Lunch provided
(*Childcare does not include meals).
Hotel Accommodations It is completely handicap accessible. There are approx.
The SOFT Conference will be held at the Hilton 75 permanent seats and the rest is open space where
Doubletree Hotel Chicago-Oak Brook, located at 1909 you can pull up a folding chair and mingle with your
Spring Road, Oak Brook, IL 60523. Reservations can be neighbor. Our entire group will be together to enjoy the
made by calling 1-800-222-TREE or (630) 472-6000. Our game, some famous Chicago hotdogs, and a terrific
special SOFT rate is $110.00 plus tax, per night. Mention night to be remembered by all. A memorable fireworks
the SOFT conference when making a reservation to get display after the game will be an added bonus.
the SOFT rate. Request all special arrangements when Picnic and Balloon Release Information
20th Annual
reserving a room: i.e. crib, rollaway bed, refrigerator, no The SOFT balloon release, held during the picnic on
smoking room, extended stay. Saturday, is the special event held each year to pay
tribute to our SOFT children that have died. You do not
Medical Clinics need to attend the conference to include your child’s
Medical Clinics will be held at Advocate Hope Children’s
Hospital’s Ambulatory Care Center on Thursday
name in the ceremony. You may choose to attend only
the picnic and balloon release, and you may release the
SOFT
th
afternoon, July 20 . Medical professionals who have had
the opportunity and expertise to work with children with
balloon when your child’s name is called. Please see the
Conference Registration Form. Our picnic and balloon International
Trisomy 18, 13 and Related Disorders will offer free release will be held at a site that is handicapped
consultation clinics to our SOFT children. Transportation
will be provided between the hotel and the hospital.
accessible. Please complete the Ryan Cantrell Balloon
Release Celebration Information form which allows us to
Conference
Lunch will be provided courtesy of Hope Children’s
Hospital for families at the clinic. Daycare for siblings will
also be available at Hope while families attend the
identify your child’s balloon with a special tag that will
travel with his or her balloon.
Scientific Symposium
July 19 – 23, 2006
clinics. Pre-registration is required to attend the Medical “Perspectives on the Medical and Genetic Aspects of the
Clinics, and selections will be filled on a “first come, first Trisomy 18 and 13 Syndromes” will be held on Thursday,
served” basis. Please prioritize your clinic choices on the July 20, 10:00 am, at Advocate Christ Medical Center,
Conference Registration Form. Clinics are restricted to Percy Hopkins Auditorium, Oak Lawn, IL. Medical
Parents and SOFT children ONLY. Professionals only may register by contacting Joanne
Participating doctors ask all participants to complete a Joslyn (708) 684-4227.
clinic questionnaire in order to ensure that clinic time is 2006 SOFT Video Montage
used to the fullest potential. A clinic questionnaire will be Kris Holladay (SOFT Founder) is compiling her annual
mailed to you when we process your registration. These conference video showcasing our children and families.
th
need to be returned no later than June 30 . Please submit 2 to 3 pictures of your precious child
Memory Room and/or events that bring a smile before June 1, 2006.
A quiet place will be provided to share special memories Please include the following information: Parents
of those we have lost. Please bring your special memory name(s), Child’s name and condition, Birthdate, Death
books or items to share. Date (if applicable) and indicate if you would like us to
Auction keep the pictures for next year, any additional
The annual Auction will be held on Saturday evening at information you would like to share. Choose a method to
6:00 pm. Please bring auction items to donate as well submit:
as your cash, checkbook and credit cards! US Mail:
Sibling Outing Kris Holladay
The sibling outing will take place in 2 parts this year. 1522 E. Garnet Ave., Mesa, AZ 85204
Siblings 6-12 will go to the Morton Arboretum for a fun As special request, send color COPIES or pictures that
filled day enjoying their new interactive children’s park. you do not need to be returned. Please DO NOT send
Siblings 13 and over will enjoy some fun in the sun at your favorite, one-of-a-kind picture.
Naperville’s only beach, Centennial Beach. Chaperones, E-Mail:
transportation, lunch and T-shirts (for 6-12 year olds) will Look for link at www.trisomy.org for the submission
be provided. The fee for both sibling outings will be page. Please keep each picture under 1 MB.
$15.00, and children must be pre-registered. Please
indicate on the registration form the names, ages and T- SOFT-wear
shirt sizes of the children attending. Short and long sleeved T-shirts are available. Please see
Optional Friday Night Outing Conference Registration Form for choices and prices.
Come and enjoy a night out watching the World
Champion Chicago White Sox defeat the Texas
Rangers. We have reserved the Fan Deck in center field!
