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FOR SCHOOL ISSUES

The TS Alliance recognizes parents and young adults often face many difficulties regarding educational and school-related issues.  This section of our website was developed to help families and self advocates successfully navigate through the educational system.

If you have questions, please call Dena Hook, Vice President of Outreach, at (800) 225-6872 or email her at dhook@tsalliance.org.  You may fax documents, such as IEP reports or other correspondence, to Dena at (888) 330-1853.

Publications

Videos

15 Tips to a Better IEP 
For many parents, IEP meetings can be overwhelming but are necessary in getting appropriate services for your child. This video, produced by the Tuberous Sclerosis Alliance, is designed to help make the process easier.

Tips for Requesting a Special Education Evaluation
If your child is still struggling in school, even when you have done everything possible to support him or her, requesting a special education evaluation may be your next step. This video offers easy to understand tips and guidance on how to properly make this request.

What If I Disagree with My School's Evaluation?
If you disagree with the school's evaluation, you have a right to an Independent Educational Evaluation (IEE). This video with the TS Alliance's Vice President of Outreach, Dena Hook, explains the process.

Who Attends a Legal IEP?
View this short video from Dena Hook, who explains who may attend your child's legal IEP meeting.

What Are Related Services for Special Education?
In this short video, Dena Hook discusses related services for those with special needs.

What is the Purpose of Goals on an IEP?
In this video from the Tuberous Sclerosis Alliance, Vice President of Outreach Dena Hook explains the purpose of measurable goals on individual education plans (IEPs).

What If I Disagree with the School's Proposed IEP?
In this video from the Tuberous Sclerosis Alliance, Vice President of Outreach Dena Hook explains what do to if you disagree with a school's proposed IEP.

What is the Purpose of Mediation?
In this video from the Tuberous Sclerosis Alliance, Vice President of Outreach Dena Hook discusses how to navigate the IEP mediation process.

School Support from the TS Alliance

If you are a teacher, therapist, or administrator educating a student with TSC and need support in understanding TSC or strategies to use in the classroom, the TS Alliance Educator Mentor program includes teachers, therapists, and administrators with experience in educating child with TSC.  For more information, please contact Dena Hook, Vice President of Outreach, at dhook@tsalliance.org or 1-800-225-6872.

TSC Professionals Online Discussion Group

The TS Alliance now offers a free, private online discussion group/listserv for professionals from a variety of fields in TSC research, treatment and education.  It is not publicly accessible.  Members are individually approved for subscription by the TS Alliance.  Professionals are welcome to join TS Alliance staff members and others who share information via this forum.  Find out more here.

Additional Resources

Disclaimer:  The information in this area of the website does not constitute legal advice.  It is solely for informational and educational purposes.  It is not intended to be a legal recommendation, nor should it substitute for obtaining legal counsel from your own attorney.


 
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Your Journey with TSC: You Are Not Alone
Tuberous Sclerosis Alliance Overview
La Esclerosis Tuberosa (Spanish Intro to TSC)
Unlock the Cure: The Tipping Point in the Battle Against TSC

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