Discussion on Medications — Panel
Our expert panel of Drs. Erickson, Berry-Kravis, and Hagerman discuss medications including what age anxiety medications should be considered, medications for aggressive behavior, and side effects.
Transitioning to Independence in Adulthood: What Helps? What Are the Barriers? — Panel
Our expert panel, Leonard Abbeduto, Jessica Klusek, Julie Lounds Taylor, and Angela John Thurman, present research-based information on the factors that promote and hinder the transition to independence for adults with Fragile X syndrome.
Female Power to Fight a Crisis — Presentation
Females living with Fragile X syndrome were asked to give advice to other females living with FXS on how to cope with this — or any future — crisis. Listen as Marcia talks through their advice and her own advice, built on decades of working with patients with Fragile X syndrome.
Supporting Your Child with Fragile X Syndrome During Special Times — Presentation
Barbara Haas-Givler shares her tips and methods for caregivers supporting children with Fragile X syndrome, starting with taking care of yourself first.
The How Toʼs of Sensory Diets in Fragile X Syndrome — Webinar
How To's of Sensory Diets in Fragile X Syndrome is the new video for this special time from Tracy Stackhouse from Developmental FX. A sensory diet is an occupational therapy intervention strategy devised to attain and maintain appropriate arousal states throughout each day.
Mindfulness and Me — Webinar
From our good friends at Developmental FX, Tracy and Ruth on using movement and meditation to deal with the anxiety and challenges of daily life being turned upside down.
My Child is Home… Now What?? Play Skills
In this webinar, Rebecca Shaffer guides us through some pointers about how to build play skills while your children are at home, and some great resources for thinking through different play opportunities while they’re at home.
My Child is Home… Now What? Keeping a Routine — Webinar
In this webinar, Rebecca Shaffer guides us through the importance of having a routine, including providing predictability and lowering anxiety, and how to create and build your own for you and your child.
Estate Planning: Special Needs Planning for Individuals and Caregivers — Webinar
Learn how to leave money and other assets for the benefit of a child with special needs without causing the child to lose important public benefits.
Guardianship for Special Needs Individuals and Caregivers — Webinar
Learn about if and when guardianship should be considered and the requirements needed, plus less restrictive alternatives, such as financial and healthcare powers of attorney.
Participating in Research Studies and Trials — Webinar
Hilary Rosselot gives advice and guidance to participating in research studies and clinical trials. She is also joined by two Fragile X moms who have participated in several studies and trials and share their perspectives and advice.
Moving from Pediatrics to Adult Services — Webinar
Dr. Marcia Braden on the difficulties associated with patients with Fragile X syndrome transitioning from a pediatric to an adult care provider.
The NFXF Conference, Research Opportunities, and a Fragile X Q&A — Webinar
A discussion of the upcoming conference including how to get the most out of your time, what to look for, and how to have a great time and connect with the community.
Autism Spectrum Disorder in Fragile X Syndrome: Co-Occurring Conditions and Current Treatment — Webinar
Individuals with a dual diagnosis of Fragile X syndrome and autism have reported greater cognitive and behavioral impairment. With Dr. Walter E. Kaufmann.
Genetics 101: Fragile X Inheritance — Webinar
Whether you’re a newly-diagnosed family in the fragile X community or have been living with the diagnosis for several years, please join us as we speak with Brenda Finucane (Geisinger, ADMI Associate Director & Professor) about the nuts and bolts of Fragile X inheritance.