Education plays a critical role in the lives of individuals with Turner syndrome (TS), but too often, families and educators are left navigating challenges without the right tools, awareness, or support.
Why the Education Working Group?
For many individuals with Turner syndrome, medical care is only one part of the story. Academic and social experiences in school can have just as profound an impact.
In a recent working group discussion, one parent noted that her daughter struggled in school, not because of a lack of ability, but because of gaps in understanding and support.
This lack of support is largely due to a lack of awareness of Turner syndrome. As Victoria Kunkel, a member of the group noted, “In general there is a lack of awareness for TS. It is important for educators to understand TS so that they can be prepared to set their student for success, and mental and physical health can affect learning. I think it is important to consider these needs in order to support a mind ready to learn.”
The Education Working Group’s Goals
Group member Katharine Edbrooke says, “I believe that establishing a Turner syndrome education committee is really important because there are specific disabilities linked to Turner syndrome that can make learning more challenging for some individuals. I also believe that most of these difficulties can be managed successfully with the right support and accommodations. Sharing this knowledge with teachers and parents is a wonderful step toward creating a more understanding and supportive educational environment for everyone.”
The Education Working Group is focused on closing those gaps by:
- Updating and strengthening educational resources – Including teacher guides and materials that reflect current best practices and assessment tools.
- Improving outreach to schools and professionals – Ensuring educators, administrators, and support staff have access to clear, practical guidance.
- Supporting the full school ecosystem – Including all school staff in the discussion, from teachers and school psychologists to nurses, aides, and families, because student success requires a team approach.
This work is rooted in lived experience, professional expertise, and a shared commitment to helping students thrive. Achieving these goals will only be possible with the participation of members of the Turner syndrome community and beyond, and we encourage you to join us.
Who Can Participate & How to Get Involved
The Education Working Group is designed to be collaborative and inclusive of all individuals working within an educational environment.
Who should join:
- Educators (general and special education)
- School administrators
- School psychologists and counselors
- Allied health professionals (e.g., speech, OT, PT)
- Advocates and professionals working in education-related fields
How to participate:
The Education Working Group meets virtually on the first Monday of each month to discuss initiatives and collaborate. Member roles and responsibilities may include:
- Review and provide feedback on TSF education materials
- Share insights from your professional or lived experience
- Help identify gaps and opportunities in current resources
- Serve as a resource for educators seeking guidance
Every contribution will help shape better support systems for students, and the more individuals get involved, the further awareness can spread. This is a meaningful volunteer opportunity that requires a small time commitment. Please join us by filling out our Professional Interest Form!
Meet the Current Members
The strength of the Education Working Group comes from its diverse members, who currently include:
- Victoria Kunkel – A former special education teacher and current paraprofessional who brings both professional expertise and lived experience with Turner syndrome.
- Katherine Edbrooke – An Autistic Support Teacher with over a decade of teaching experience whose personal connection to Turner syndrome provides a deep understanding of the social and academic challenges associated.
- Susan League, PhD – A school psychologist of over 25 years who understands the variability of educational experiences in Turner syndrome due to personal experiences.
- Dr. Suzanne Bousquet – A retired cognitive psychology professor who has led educational initiatives for TSF for many years, inspired by familial connection to Turner syndrome.
This group reflects the blend of clinical expertise, classroom experience, and lived perspective that is essential to building meaningful, practical resources.
Join Us
If you’re passionate about education, equity, and supporting students with Turner syndrome, we invite you to be part of this work.
By joining the TSF Education Working Group, you’re helping shape the future of how Turner syndrome is understood and supported in schools.
Together, we can ensure that no student is left navigating their education without the tools, understanding, and advocacy they deserve.
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