Welcome

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.

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Photos from the 2010 SOFT Conference in Sioux Falls can viewed here.
You can also now upload your own conference photos and family photos!
Note that this is a new gallery from the one that has all the previous conference photos.  All photos will be consolidated in the new gallery in the coming weeks.

Request a free Information Package for New Families by clicking here.

Upload a short video of your child here!

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President's Message

Dear SOFT families:

The weather is changing for the better here in New York. We have been very lucky to have many record breaking, warm days here so far. We can only hope that it will last into summer this year and we will actually see some summer weather! We were able to do a wheelchair bath with the garden hose a few weeks ago. I always hate the end of winter when Stacy’s wheelchair is so full of salt and dirt from the winter.

We are quickly approaching time for conference registration and then the actual conference will be here in less than three months! The hotel is waiting for your reservations. Remember to call them soon and get signed up for your room. There were only so many rooms open in our room block so make sure you don’t miss out on getting your room. The deadline for rooms is in June! The conference committee is working hard to plan all the events that will be happening when you arrive. The clinics, the workshops, sib outings, baseball outing as well as the picnic and annual balloon release. If you are not able to attend but still would like a balloon released for your special angel send your request to jlaird@rochester.rr.com. Include your child’s name, birth date, date of death and diagnosis. Please include your name and address also so we can send you a duplicate card like the one attached to the balloon after the conference. We want to make sure that we can have as many releases printed before we get to conference as possible. Don’t forget your registration forms have to be completed and in before the conference so we can plan and order the food that is necessary for the meals. Remember to order your soft wear on your order form as there will be limited items available at the conference.

In May there will be an article in the American Journal of Medical Genetics. I was contacted as were several other support organizations to talk about hearing the news and what we want the Doctors to know. I wanted to let Doctors know how important our children are to us even with the diagnosis they give us. They are a part of our family and forever touch our family for however long they may be with us. We will get you more information when it is published. The article with all the organizations seemed to have a similar theme through all organizations.

In May the Wolpert family represented SOFT at the American College of Medical Genetics in Albuquerque, New Mexico. They set up and staffed the booth for three days. They were able to educate those who stopped by the booth on SOFT and our mission. They were also able to have Kammie there to share her smile and great personality. I am sure she won many hearts of those she chatted with for those days. We will have to name her a SOFT Ambassador! Thanks so much to the Wolpert family. (Jude also shared her many beautiful pictures of “Faces of Trisomy” while they were there.

The month of March was Trisomy awareness month. There were a lot of posts on Facebook about special children with Trisomy 18 or Trisomy 13. Jude put together a video and also shared that with her pictures. We can hope that many more people became aware of what Trisomy is and understand a little more about our kids and how they have touched our lives forever!

Stacy had a good winter, only one or two colds and she dodged the H1N1! She has been working at her program daily to volunteer out in the community. She enjoys all the activities she participates in. She shops every Saturday at the mall with Judie and me. She says she is getting her wardrobe and all the jewels and shoes she needs to be set for conference in July. She thinks we should have a competition, who can bring the most sneakers to match their outfits during the conference? Any one up for the challenge? Now how do we get all 55 pairs of sneakers in a suitcase to bring with us?

In the last three newsletters we have included Angel Wings to remember the Angels we have lost. If you want to send a card to someone on the list to remember that special child just email Jack Laird for the address at jlaird@rochester.rr.com. Let them know we have not forgotten!

Hope this letter finds you and your children in good health. See you in South Dakota. I can’t wait!

PS I just received news that Boni Hassan had a massive heartattack and prayers for him are welcome by his family. For those who do not know Boni, his daughter is the oldest young lady alive with Trisomy 18 at this time. Please wish Boni good health and our prayers are with Chris.

The VanHerreweghe family
Barb, Dave, Stacy and Andy