DFX's Tracy Stackhouse was a featured presenter at the 2024 International Fragile X Conference, and DFX annually partners to support World Fragile X Day which is on July 22.
The FX MAX Workbook
This workbook brings together resources created over many years of working with children living with Fragile X syndrome, and offers tools to expand the understanding of Fragile X among providers and families, empowering them to deliver higher quality care for children with Fragile X.
This project was supported with grant funding from the Colorado Developmental Disabilities Council which is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS).
Join us to celebrate "DFX: A Bright Future" at our 3rd Annual Soiree on Thursday, August 28 . Learn more here
DFX's Fragile X Work Includes:
Fragile X 101
Learning Journeys Course
This free, on-demand course through our Learning Journeys platform provides a brief overview of Fragile X syndrome and an introduction to the benefits of using care mapping to promote comprehensive, Fragile X informed care. In the second video, viewers have the opportunity to watch as Tracy and a caregiver walk through the care mapping process in relation to her son with Fragile X syndrome.
Advisory Work
DFX Executive Director and Director of Innovation Tracy Stackhouse, MA, OTR/L, is a member of the National Fragile X Foundation Clinical Research Consortium, the Scientific And Clinical Advisory Committee, and the NFXF Advisory Council, and an expert advisor to the CDC and RTI Fragile X Priorities Panel.
Fragile X Partners
DFX collaborates with colleagues working to advance research, advocate for, and support people with Fragile X Syndrome in the US and around the world. We are proud of our connections with the National Fragile X Foundation, FRAXA, Colorado Fragile X, and other organizations dedicated to improving the lives of people living with Fragile X Syndrome.
We partnered with the National Fragile X Foundation to create a MasterClass on Fragile X for educators - click here to learn about
this class.
DFX and Fragile X Syndrome
Developmental FX (DFX) was founded in 2003 by Tracy Stackhouse, an occupational therapist, and Mouse Scharfenaker, a speech-language pathologist. Tracy and Mouse were long-time colleagues who worked together at Children’s Hospital Colorado and the MIND Institute at UC-Davis. Many of their clients were children who were navigating life with Fragile X Syndrome, a genetic condition which is causes intellectual and developmental differences. Based on their many years of work with these children and families, they believed that for these children (and by extension, others with developmental challenges) to be able to reach their full potential, all those in their ecosystem needed to be working in sync to create a tapestry of understanding and support for the child’s unique needs. This commitment formed the basis for the concept of “Therapy that fits ®” and their founding of Developmental FX as a clinic to provide integrated, multidisciplinary care.
In every area of our work, DFX is committed to a vision of truly transformative care for children with developmental disabilities, based on a model in which each child’s unique needs are evaluated in the context of family and community, a path forward is created with the child’s and family’s voices front of mind, and together the clinicians and caregivers plant seeds of understanding and inclusion across a child’s ecosystem. The children and families we serve are equipped with life-changing resources and ready to engage more fully in an ecosystem that is more aware and supportive of their needs.
Mouse retired in 2018 but remains connected to DFX as a special advisor and champion of our work. Tracy is currently the Executive Director and Director of Innovation.
DFX can provide professional and parent training in any number of areas related to Fragile X.
Topics we have been asked to speak about include, but are not limited to:
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Overview of Fragile X Syndrome
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Fragile X through the Lifespan
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Challenging Characteristics of Fragile X Syndrome
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Utilizing a Sensory Diet at Home and School
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The Sensory Experience: What it feels like to be Hyperaroused
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The Practicalities of Life with Fragile X Syndrome: From High School to Adulthood
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Living Life the Fragile X Way
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Intervention: Occupational and Speech/Language Therapies and Fragile X Syndrome
Consultation focuses on supporting the broader team around the client—such as caregivers, educators, therapists, or organizational staff. Our goal is to share expertise, build capacity, problem-solve collaboratively, and provide education, strategies, or environmental modifications that empower others to better support the client within their natural environments. Consultation does not involve direct intervention with the client but rather equips the support team with tools for long-term success.
Yes! Each state and country have their own laws and regulations related to consultation. The initial $150 application fee helps to cover our exploration of services in your area.
If the model is not a good fit for you due to regulations in your area or a better fit of care elsewhere, we can provide you with potential local resources.
At DFX we have a multidisciplinary team consisting of occupational therapists, speech-language pathologists, feeding therapists, psychologists, and a Fragile X syndrome expert. Our Rooted Path team leaders will select a consultant who is best suited to work with you, and others on the DFX team may collaborate as well.
