Join the Fragile X Resource Center of Missouri on Saturday, October 29 for our annual symposium. The Symposium will focus on parent/caregiver connections and planning for life after high school.

Dr. Deborah Hall will give a presentation on (Fragile-X) premutation carriers and her research pertaining to the treatment of FXTAS (Fragile-X Associated Tremor/Ataxia Syndrome), a condition that impacts Fragile X Carriers. As part of her visit to St. Louis, Dr. Hall would like to meet with individuals who have the Fragile premutation and who would be interested in participating in her research. She will be available after lunch to meet with anyone who is interested in participating in her research.

Beth Moeller will talk about the St. Louis Arc’s efforts to create housing options for families. She has invited a family who has a son with Fragile X Syndrome to come tell their story of how they prepared him for moving out and how the Arc staff have supported him in his own apartment over the past five years. The talk will provide an overview of Arc’s community living goals in its current strategic plan and how her team fits into that plan. She will talk about the Parents’ Cooperative and how that group has evolved.

This year's event will be in-person, and as always, it will be free to attendees. We encourage you to share this with others who are raising individuals with unique needs and those who support you. Lunch will be provided.

If you have any questions, please contact Sue Fishman at fxrcmo@gmail.com.

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You may qualify for a new research opportunity. In the link below you will find information for a new study being conducted by researchers from Rush University in Chicago, IL who will be in St. Louis collecting data during our symposium.

The study is titled Validation of Fragile X-Associated Tremor Ataxia Syndrome Rating Scale (FXTAS-RS).

They seek men and women over 50 years old
Diagnosed with FXTAS, or
Premutation Carrier without FXTAS

If you would like to learn more about this study, please visit https://redcap.link/fxtas_research_opportunity,

Call: 312-563-3855, or

Email: michelle_tosin@rush.edu.

Annual Fall Symposium: Planning for Adulthood

By Fragile X Resource Center of Missouri

Annual Fall Symposium: Planning for Adulthood