Developmental FX is recognized by the National Fragile X Foundation as a part of the Colorado Fragile X Clinic. The Clinic Coordinator and Medical Director (Dr. Nicole Tartaglia) for the Colorado Fragile X Clinic are housed at Children’s Hospital Colorado. Tracy Murnan Stackhouse is a member of the National Fragile X Foundation’s Clinical and Research Consortium, the Scientific and Clinical Advisory Committee, the NFXF Advisory Council, and an expert advisor to the CDC and RTI Fragile X Priorities Panel.
Tracy Stackhouse and Mouse Scharfenaker, DFX co-founders, each have over 20 years of experience specializing in the field of Fragile X Syndrome (FXS) and have provided expert consultations and trainings to families and schools locally, nationally and internationally. Mouse retired in 2018 but is still available to consult with our team from time to time.
Tracy offers virtual consultations to families and in-service training to school teams, as well as training and consults to clinics and other organizations, to help them better support a child with Fragile X. She regularly presents about FXS to audiences nationally and internationally, in university and community settings. Many of The National Fragile X Foundation’s Community Support Networks have organized clinics in locations including Louisiana, Pennsylvania, Virginia, and internationally in Argentina, Brazil, Taiwan, Spain, and Ireland.
In 2021, DFX launched an online learning platform, Fragile X Academy, through which we share information on “living the Fragile X way”; the initial course is offered free-of-charge to caregivers and clinicians interested in an introduction to Fragile X. In addition, to family and school consultations.
DFX can provide virtual professional and parent training in any number of areas related to Fragile X. Topics we have been asked to speak on include, but not limited to:
- Overview of Fragile X Syndrome
- Fragile X through the Lifespan
- Challenging Characteristics of Fragile X Syndrome
- Utilizing a Sensory Diet at Home and School
- The Sensory Experience: What it feels like to be Hyperaroused
- The Practicalities of Life with Fragile X Syndrome: From High School to Adulthood
- Living Life the Fragile X Way
- Intervention: Occupational and Speech/Language Therapies and Fragile X Syndrome
The DFX team has put together the FX MAX – a Fragile X Planning Tool which is a comprehensive training and consultation process. We can work with you to plan full or half day virtual trainings in the use of the FX MAX, on specific topics related to Fragile X, such as:
- IEP review or participation
- Behavior challenges
- Sensory integration
- Sensory Diets
- Self-regulation and coping skills
- Fine and gross motor skills including handwriting
- Speech and language
- Social functioning
- Play and early skill development
- Development of executive functioning skills including planning, organizing, inhibitory control and working memory skills
- Eating, feeding, toileting or other activities of daily living difficulties
- Site visits to home, school and community programs
- Transitional planning
If you are interested in planning a virtual consultation or clinic for your organization, email us at fragilex@developmentalfx.org. For more information about Fragile X Syndrome, please visit the National Fragile X Foundation’s website, or considering taking DFX’s free online course which offers an overview of Fragile X Syndrome – learn more about our Fragile X Academy here.