SATB2 Gene Foundation Planning Survey

SATB2 Gene Foundation Survey
SATB2 Strategic Plan Survey

The Board of the SATB2 Gene Foundation would please ask you to support our common cause of enriching the lives of individuals diagnosed with SATB2-associated syndrome and their families, by completing this short survey. Your responses will further guide implementation of our current strategic plan, which expires at the end of this year, and will help inform our upcoming three-year strategic plan for 2022-2024. There will be a random drawing for five (5) individuals completing the survey, with each winning a $50.00 Amazon Gift Card. The Survey begins with a few questions about you, followed by four sections that reflect our primary pursuits.
***To be included in the gift card drawing, please complete this survey by end of day February 14, 2021!***
*** For best results, you are encouraged to take this survey using Google Chrome ***
Please verify that you are the Parent or Primary Guardian of individual(s) with SATB2-Associated Syndrome listed above*

YesNo
Country you live in:

If you wish to be entered into our drawing for one of the $50 Amazon Gift Cards, or answered yes to volunteer opportunities, please provide us with the following information:

First NameLast Name
Email
example@example.com
THANK YOU!

You have completed the survey. We appreciate your responses!
Should be Empty:

	Important	Neutral	Not Important
Grants for equipment
Grants for financial support to SAS families in hardship
Developing online regional support networks, including area leadership teams & social media
Coordinating Regional family meetups
Creating Sibling Programming such as sibling support groups or a buddy system
Creating New Family Support Tools (i.e. tool kits, zoom meet ups, and other resources)

	Very Interested	Somewhat Interested	Not Interested
Family Highlight Videos where we interview individual families to discuss topics such as their journey to diagnosis, how they manage the unique challenges of SAS, or highlight successes
Programming to highlight medical research and advances, especially as they relate to SAS
Programming to better understand scientific advancements such as gene therapy, CRISPR, etc.
Virtual small group meet-ups/discussion groups that focus on specific topics such as "parents of adult children," "new to the diagnosis," or "siblings" etc.
AAC webinars that are specific to different ages and skill level of users
Financial Planning Webinars
Motor Therapy, Physical Therapy/Occupational Therapy Webinars
Sleep Patterns

	Very Important	Neutral	Not very Important
Speech and Communication Issues
Developmental Delays
Craniofacial & Dental Anomalies
Sleep Issues
Seizures
Bone Density
Behavioral and Attention Issues
Temperature Regulation
Genotype/Phenotype Correlations
High Pain Tolerance
Dietary/Feeding Problems

SATB2 Gene Foundation Survey