03 - August Newsletter

 

Dear {cbtag:cb_registrantlastname|info:receiver} family,

We are just wrapping up our largest meeting yet, with 44 families who traveled to Tysons Corner, VA! For 23 of the 44 families, this was their first time at a Simons VIP Connect Meeting.

Attendees:

Forty of the families who attended the meeting participated in at least one research study. The researchers extend their thanks for your enthusiasm and patience!

With as many projects as there were, we are amazed at how many families found time to participate!

Watch for our next newsletter later this summer for a more
detailed recap AND pictures of the 2015 family meeting!


Latest news!

1. Family Meeting Feedback Survey: Earlier this week, we sent out a survey for families who attended the meeting to hear about your experience with the meeting. If you missed the survey, please let us know and we will resend it to you.

2. Information for Schools: We've recently had a request for information to share with school teachers and other professionals involved in your child's education. Below we are providing two general links to resources where you can find expert reviewed information.

  • UNIQUE www.rarechromo.org. UNIQUE's scientific advisory board compiles information from medical journals and parent report to develop pamphlets about different genetic conditions. You can search for your genetic condition on this website and download an informational booklet.
     
  • GeneReviews www.genereviews.org This resource is a top choice for genetics professionals. While the disease entries are written for medical professionals, this type of resource, funded by NIH, may be just what your child's teachers are looking for. We expect updates to these resources over the next year; researchers that have teamed with Simons VIP Connect are updating the entries for 16p11.2 Deletions/Duplications and 1q21.1 Deletions/Duplications on GeneReviews.

3. Coming soon, 16p11.2 Deletion Guidebook: This summer, our genetic counseling intern from Sarah Lawrence College has been working hard to put together a booklet for families with a 16p11.2 deletion diagnosis. We discuss genetics, common diagnoses, common concerns, FAQ's, and more. We anticipate this will be released in early fall 2015, and would ask for any feedback you may have. We plan to create more family-friendly materials like this, so stay tuned and feel free to send us any ideas you might have for other resources you’d like to see created!
 


Individual Feedback: NOW AVAILABLE

In case you haven't heard... we JUST released individual results for a survey that many of you have completed (called the "Child Behavior Checklist" or “CBCL”). To view the result report, follow the instructions below:

1. Log onto your www.simonsvipconnect.org account.

2. Select your child's account.

3. Navigate to the "Attachments" tab.

4. You will find the first downloadable report under this tab.

We were able to provide feedback results for many individuals who have completed the CBCL. However, for some people, there may have been too few participants in the same age and genetic status category to allow us to report individual results just yet. As more families join Simons VIP Connect and participate in the study, we expect that we’ll be able to share more individual results. 


We are planning to have results available for several other surveys very soon, so stay tuned!
 


Social Media Highlights

Follow us on Facebook for our latest updates. We will be posting news articles, blog posts, family videos, research summaries, and other helpful information related to a variety of concerns like: speech and language issues, school communication, and behavior (at your request!). If you like what we post, be sure to "like" the post so we know we're sending the right information to you. If you want to see something else or want to recommend a resource, leave us a post or send a message!

We are looking forward to developing the "Family Videos" we filmed at the meeting. Thank you again to everyone who volunteered to talk about your experience with Simons VIP! Heather is having a great time watching all of the clips she recorded.

Be sure to keep an eye on our YouTube channel for new webinars and family videos!


Updates for 1q!

As we update our resources, we want to make sure you know when new publications are being released thanks to YOUR participation in research.

Dr. Raphael Bernier from the University of Washington (one of our speakers at the Family Meeting!) recently published an article, with his colleagues, about 1q21.1 deletions and duplications. The information presented in this article was provided by participants in the Simons VIP study.

You can read a short summary written by the authors (also called an "abstract") here; please let us know if you would like to read the full article and we can share it with you. We plan to write our own family-friendly summary for you all within the next couple of months, and we look forward to sharing this information with you


Thank you again for your participation in Simons VIP Connect. As a team of families and researchers, we can work together to find answers to our questions about these genetic diagnosis.

All the best,
-The Simons VIP Study Team

 

You can {unsubscribe}Unsubscribe{/unsubscribe} if you no longer wish to recieve updates from the study team.