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Trisomy .org is S.O.F.T., 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.

 

president's message

Dear SOFT families:

We are starting to receive the conference registrations and it is so exciting.  Every year we attend and it is such a long year in between each conference.  Registrations coming in mean it is almost time to get together again!  The brochure is out in the mail and the Denver conference committee is really working hard.  I have been looking through the brochure.  Do you think the siblings will let me go on the White Water Rafting?  It looks like so much fun.  I am looking forward to the transition clinic as we are working on ways here in Rochester to better transition any young adults with medical issues.  Look your brochure over and get your registration in to help SOFT Rock the Rockies!  You won’t want to miss it.  Check the newsletter for another brochure or get on the website at www.trisomy.org to get another copy and updated information on the conference.  Please remember to get your hotel reservations in at the hotel as the rooms could sell out and you can not sign up after the deadline.  Those that cannot attend but want to send in a balloon release you can do so on the registration form or email Jack at jlaird@rochester.rr.com and include all the necessary information included in the registration form.  We are able to offer some Joey Watson memorial funds this year again.  If you family is interested, please send a self addressed, stamped envelope to SOFT and I will send you an application.  Don’t wait till it is too late we will be awarding the money by the end of May.

This week is finally turning sunny and warm here in Rochester.  It has been a long winter and we are looking forward to nice weather.  I am not fooled though because we have had snow in April before.  We can only hope it continues to stay warm and mild and we have an early spring.  Stacy has done well this year and is just now getting her first cold.  It has been a very good year.  She was diagnosed with cataracts last year and we decided then not to do anything due to her health.  Now that we see her not attending to her surroundings as well we will be consulting with a surgeon to try and get her cataracts operated on.  Hopefully, we can get one eye done before conference and then get the other one done after conference.  We are not looking forward to another surgery but we need to give her opportunities to see her surroundings better than she is at this time.  Stacy still attends her day hab program daily and loves being out in the community volunteering.  She has many friends; especially Jason who loves to hold her hands every day.  She never fights the young men away.

 

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July 24 through Sunday July 27, 2008
Denver, Colorado

To submit your pictures to get in the video montage (Slide Presentation),
click here.

Deadline: June 16, 2008!

SOFT for SALE

SOFT Pins - Impress your friends and loved ones.
The size of the pin is 1”.
Only $5 (Shipping Included)

Awareness Bracelet (image)
Order your bracelet today by clicking here to download the form or purchase online.

Angel Charm & Ribbon Charm
Order your charm today by clicking here to download the form or purchase online below.

Angel Charm -
Ribbon Charm -

Kris Holladay's SOFT Video
please call SOFT to verify shipping and handling costs on the dvd/video

The poetry book compiled by our own John Carey!
Titled: Softly Written, Softly Spoken. Only $6/copy (Shipping Included)

Pay ONLINE click on the 'add to cart' in red!!!

OR

Send checks for the
above purchases to:

SOFT c/o Barb Van Herreweghe
2982 South Union St
Rochester, NY 14624

 

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Trisomy Info

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