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.
_________________________________________________

Please compete a conference evaluation by clicking here.

If you requested a New Family Package between August 5 and August 16, we may not have received it due to an outage on our server.  If you have not heard back from us, please resubmit your request.

SOFT is now on Facebook!  Join our group by clicking here.

Upload a short video of your child here!

_________________________________________________

Dear SOFT families:

We are approaching the spring and summer season.  We are just getting to the warmer weather this week.  We only hope it will last for awhile as we are certainly ready for the snow to stay away. 

Stacy has been trying to spend entirely too much time at Strong this year.  She was in over December for a hernia under her ileostomy.  She seems to be doing well after that surgery.  She decided to go back in during an episode with a stomach virus.  She put way too much out through her ileostomy and I couldn’t match the output with input.  That happened to be two days before my mom’s funeral.  They worked with me to get her out in time to attend my mom’s funeral and she even stayed well for that whole day.  She decided to try one more weekend a couple weeks ago.  Luckily, that time they found nothing and we went home in the morning.  She seems to be having a few too many stomach viruses’ than we would like to see this year.  Hopefully, she is on the mend and ready to stay home!

The Board spent several hours on the phone a week ago to make sure that SOFT continues to move forward with the goals we have set.  This makes it a little easier to proceed through the board meeting at the conference when we are able to address issues earlier in the year.  The Wolperts are assigned to the public awareness committee.  Jude is busy trying to get out news to everyone she can about the conference and the balloon release and anything else that would be of interest to our membership.  She will be working with Kelly Freeze to try and put together a short video of some of the children so we can include it with new family packages.  Don’t forget you can submit your short video to SOFT on the website so your child can be included.

The conference committee is busy getting ready for all of you to join us in Roanoke, Virginia.  The brochures are out in the mail as well as on the website and in this newsletter.  The clinics are set up and are first come first served so don’t wait till the last day to get in your reservation as there may not be any clinics left.  Get the best selection, register now!  Your reservation at the hotel can be made anytime up till June.  After that you will not be able to get the SOFT rate.  If you need a handicapped accessible room give me a call so we can make sure you are set up.  800-716-7638, remember I do work during the day so evening is the best time to reach me or on the weekends.

I received word that the organization making our bracelets will not be making anymore after the last 8, I have to sell.  If you want one let me know now as this will be the end.  If people are still interested I will try and find someone else to help us move forward.

The new Care books have been going out in the mail as they are ordered.  It is great to see people so excited to get the news they need to care for their child.  If you still need your copy you can order on the website or give a call and we can do it over the phone.

July is quickly approaching; we are still accepting applications for the Joey Watson Memorial fund for a small assistance grant to help for the conference.  If you are still interested email me so I can send you a copy of the application.

We will be on the road the Monday before conference so we can get to Virginia to enjoy the wonderful conference they have planned.  Hope we see you there or maybe on your way as we travel from New York to Virginia.

SOFTly,
The VanHerreweghes
Barb, Dave, Stacy and Andy