Support Organization for Trisomy 18, 13, and Related Disorders (SOFT) is a nonprofit volunteer organization offering support for parents who have had or are expecting a child with a chromosome disorder (especially Trisomy 18 and Trisomy 13), and education to families and professionals interested in the care of these children.
A New Family Information Package is available by mail or by download. This package contains sample newsletters (mail option only), a Trisomy 18 and Trisomy 13 Fact sheet, a conference brochure and registration form, a book order form, and a SOFT New Member Registration form. There is no charge for this package. Medical professionals may also request this package.
Request a New Family Information Package
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Hotel registration information for the 2012 conference in St. Louis is now on the Conference page.
Check our Discussion Forum where you can share information with other trisomy families.
Check out GoodSearch. Each time you search the Internet or shop online at a participating store, a donation will be made to SOFT at no cost to you! Download the GoodSearch toolbar and add it to your browser now!
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President’s Message
Dear Families:
It is hard to imagine that the holidays have come and gone! I hope everyone had a safe and healthy holiday season. Our weather has really been crazy this year. No snow for Christmas in New York? Who would think that is possible. It has been that way all over the country. I just hope it doesn’t mean our spring and summer will be late with winter holding off for so long.
It is time to think about making your reservations for conference this year. Don’t forget your reservation at the hotel can be cancelled. Last year we ran out of rooms so remember to book early. The Hilton St. Louis Frontenac is the hotel chosen for the conference. We are really excited to be at this hotel as there is a shopping center across the street as well as many restaurants, grocery stores and drug stores. The hotel is including internet in the rooms, four continental breakfasts per room and 15% discount in the house restaurant. There is no parking fee and there is a complimentary shuttle from the airport (Lambert International) as well as to the Galleria Mall and West County Mall. So what are you waiting for, make your reservation. I heard last night that the Adult outing will be a baseball game between the Cardinals and the Cubs! When you call for your reservation at 314-993-1100 don’t forget to remind them you need the room block for Support Organization for Trisomy and let them know the specials you may need such as a fridge in the room or other specials items. The room rate is $105. Check in time is 3:00 PM and check out is Noon. The committee is busy meeting to firm up all the details such as the clinics, workshops, Stroll for Hope and the picnic. We are hoping to slow the pace down a little this year to allow for more time with families being able to meet and greet each other. The brochures will be out in early March and remember you can register on line when the brochure is available. Don’t forget your full payment for conference must accompany your registration form for you to be registered. So you have never been before? This is a description I heard from an attendee after their first time, “ The SOFT conference is like a family reunion, but, you really want to be there!” So don’t miss out, be there for sure!
Remember, apply for partial funding to assist your family if needed with limited funds through Joey Watson Memorial Fund (application on website) as well as through Noah’s Never Ending Rainbow.
Well we just got a new accessible van for Stacy to travel in. We bought a mini van this time to help with the high gas prices. It has been converted with the lower floor, sliding doors and a power ramp. We are still getting used to the new van and getting Stacy in and out but I think we are going to like it. We are waiting for the companion seat to be installed so someone is close to Stacy as we travel, she loves the hand holding all the way to our destination.
The holidays were great in the VanHerreweghe household. Family came in from South Carolina and Maryland. It was great to see everyone and Stacy loved the attention from all her little cousins. She misses them now that they have moved to other states. I guess we will just have to travel more!
Look in the newsletter for more highlights on the conference. Can’t wait to see you all in sunny St. Louis!
The VanHerreweghes
Barb, Dave, Stacy and Andy
