You asked, we listened.

Content from Fragile X professionals presenting on topics you want to know about.

On this Giving Tuesday, we want to give you a gift of thanks – and one we believe will help you on your own Fragile X journey. You shared in the 2022 Community Survey you wanted more information about FXTAS, Aging with Fragile X, and practical strategies for everyday life.

We are sharing three presentations from the NFXF International Fragile X Conference in San Diego, which begin to address these topics in detail. Hear more about FXTAS, emotion dysregulation, and common behaviors and available treatments across the lifespan from these Fragile X professionals. Not only is this content top-notch, but it is also practical and actionable in your every day life.

Diagnosis and Treatment of Fragile X-Associated Tremor Ataxia Syndrome

Deborah Hall, MD, PhD

Fragile X-associated tremor/ataxia syndrome (FXTAS) occurs in premutation carrier men and women when they are over the age of 55. It is associated with tremors, balance problems, and other neurological signs. This course provides an overview of the diagnosis and treatment of FXTAS led by a neurologist who has been treating FXTAS patients over the last two decades. A summary of clinical features of the disease will be provided and the neurologist will discuss treatment options, including surgery for FXTAS patients. Patients, caregivers, junior researchers, and others may benefit from the material in this presentation.

Emotion Dysregulation in Fragile X Syndrome

Rebecca Shaffer, PysD

This presentation focuses on the signs of emotion dysregulation in Fragile X syndrome and ways to respond including practical strategies and an Emotion Regulation Toolkit to take home.

Common Behaviors and Available Treatments Across the Lifespan

Debra Reisinger, PhD

Individuals with Fragile X syndrome (FXS) can experience a variety of symptoms and behavioral challenges that change across development. This presentation will highlight how to recognize behavioral challenges in FXS and the most common behavioral difficulties and treatment options at each developmental stage. Specific tips will be shared that families can easily implement with their children or adolescents.

We don’t have all the answers, but we will never stop providing you with knowledge, resources, and tools to empower you along the Fragile X journey. In this season of giving, know the NFXF is so grateful for this incredible community.

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Kristin Bogart, Senior Director, Development and Communications

Kristin Bogart
Kristin joined the NFXF team in 2019. She has over 20 years of experience in fundraising and non-profit management, event planning, and board and volunteer development. She earned a bachelor’s degree in economics and a master’s in public administration. Kristin loves spending time with her two teenage sons and in the company of friends, and enjoys gardening, running, and hiking in the Santa Cruz mountains.