05 - meeting planning



Dear Simons VIP Connect Families,

Please read below for important information regarding future Simons VIP meeting planning.

The Simons VIP Connect online family registry and research study are continuing.

  • We are excited to see existing community families participating in the research and new families joining each week!  
  • The Simons Foundation will continue to sponsor the online community and will continue to enroll families in research.
  • We will continue to collect online information, provide group feedback and individual feedback on the information collected, connect families to each other directly, provide webinars, and share newsletter updates on research and other areas of community interest.  
  • The Simons VIP Connect Facebook community, Twitter and YouTube feeds will actively continue.
  • The Simons Foundation will also continue to fund scientists around the world who are working toward a deeper understanding of the impact of deletions and duplications of 16p11.2, 1q21.1 and other related changes on the brain and behavior. Much of this work is motivated and made possible by the existence of a strong family organization.

After the July 2015 meeting, the Simons Foundation does not plan to sponsor or organize family meetings, but we will be happy to announce future family-planned meetings, attend and present information, and answer questions at up to two family meetings per year.  

  • Many other rare disease communities hold in-person meetings that are organized by the parent communities, allowing them to shape the meeting location, content, and activities to best meet their needs. We think this is an important transition so that the families can decide what activities will be most beneficial to their community.
  • We anticipate there will be interest within the Simons VIP Connect community to continue gathering in some way, so we have scheduled a discussion session at the family meeting on Sunday morning, July 26th, for any families who are interested in forming a group to discuss and plan future family-initiated gatherings.  We are glad to provide you with experience we have gained in planning previous meetings.  
  • Any families who are not attending the July meeting and are interested in joining a parent discussion group on future meetings should contact the VIP community coordinators at This email address is being protected from spambots. You need JavaScript enabled to view it.">cThis email address is being protected from spambots. You need JavaScript enabled to view it.!

Our researchers are committed to the Simons VIP Connect community and are honored to have the opportunity to work with so many committed and caring families as we travel together on this journey. We look forward to our continued work together.

-The Simons VIP Study Team



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