Our expert panel — Suzanne Aaron, Caitlin Arndt, Arlen Gaines, and Margaret Gilbride — shared insights, strategies, and resources to help individuals with Fragile X syndrome and their families navigate grief and loss.
Kelly Piacenti shared insights and resources to help families understand how a letter of intent can be vital in creating a comprehensive care plan.
Dr. Deby Barbouth explores evidence-based lifestyle choices, mind-body techniques, and more to enhance well-being for women with the Fragile X premutation.
Rebecca Shaffer leads two presentations about how to stay calm and manage intense emotions. The first is for self-advocates, and the second is for caregivers of individuals with Fragile X syndrome.
Licensed Marriage and Family Therapist (LMFT) Diane Simon Smith discusses the amount of stress that is often placed on a marriage when a couple has a child (or children) with Fragile X syndrome.
Hear about Denise’s hope for greater awareness and acceptance of Fragile X syndrome in our video series, created with Shionogi.
Hear about what Diane calls her “beautiful chaos” in our video series with the National Fragile X Foundation
Hear about Kara’s family’s experiences and how National Fragile X Foundation has helped them make their way.
Rene shares his story about his son’s diagnosis of Fragile X syndrome and about his hope for the future.
Jessie, mother of 5 with #FragileXSyndrome, shares her experience and what she hopes the future of care looks like.
In this webinar, Rebecca Shaffer walks us through what your child tells you, strategies to prevent the behavior, reinforce good behaviors, and build new skills.
Creating a plan is a meaningful and loving step toward securing the best possible future for your loved one.
Tracy Stackhouse discusses the importance of self-regulation in individuals with Fragile X syndrome, including tools, safety, and connection.
Most people first hear about Fragile X when someone in their family is unexpectedly diagnosed. We have two letters from two moms to share with you.
A mother and wife shares the lessons she learned while navigating her son’s very scary Fragile X syndrome diagnosis and the ensuing pressure it put on her marriage.
Anne Hoffmann and Kristen Vincent present tools that caregivers can use to encourage communication development for children during their early stages of development.
During this webinar, our speakers presented an overview of ABLE accounts, the benefits of having them, examples of qualified disability expenses, and how to find the most appropriate ABLE account provider for you.
Kelly Piacenti provides an introduction and overview of what steps may be included when creating a financial plan for your loved one living with Fragile X.
Our panelists share strategies to help manage the risk of developing and treating Fragile X-associated conditions and recommendations for informing and advocating for your healthcare and mental health needs with your providers. This conversation focuses on the individual living with the Fragile X premutation while also recognizing that they may be a multi-generational caregiver within their family.
An introductory discussion on preparing a plan for the future to preserve your legacy and ensure that your loved ones are well cared for.
The webinar was a facilitated one-hour Q&A session covering a wide-range of topics. The panelists shared recommendations and information during the discussion, each from their own professional perspectives.
Ilana Garber, a Fragile X carrier and mother of a child with Fragile X syndrome, shares her experience with Fragile X and offers her perspective to people interested in testing for themselves or their child.
This panel considers the perspectives of siblings of individuals with Fragile X syndrome.
This presentation highlights how to recognize behavioral challenges in FXS and the most common behavioral difficulties and treatment options.
Experts in the field discuss support and solutions for females with Fragile X in this panel discussion and Q&A.
Calling all fathers, papas, daddies, pop, and dads—Will Bridges discusses raising a child or children with Fragile X syndrome. Not sure how to explain Fragile X syndrome to a colleague? We’ve got you covered. Do you find yourself frustrated at home? We all do, and we have some ideas that may help.
This presentation focuses on signs of emotion dysregulation in Fragile X syndrome and ways to respond including practical strategies and an Emotion Regulation Toolkit to download.
This presentation focuses on tools that caregivers can use to encourage communication development for individuals at early stages of development.
Many families struggle with deciding when the “right” time is and what to say. Here are some strategies to help in having a conversation with your daughter about her Fragile X syndrome diagnosis.
Anne Wheeler, PhD discusses how mothers of children with Fragile X syndrome may experience increased vulnerability to stress due to their premutation status.
Parents and other caregivers must consider many factors when caring for adults with Fragile X syndrome, and the process of planning and obtaining adequate care can be quite complicated.
Tracy Stackhouse and Ruth Meissner with Developmental FX share their mindfulness techniques for treating behaviors in Fragile X syndrome.
Dr. Rebecca Shaffer joins us to give advice and tips on developing play skills with your children with Fragile X syndrome.
Rebecca Schaffer, PsyD, walks parents and caregivers through how to keep a routine around the home, especially during COVID-19. But, it is timeless advice.
Learn about 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.
Derek Graham guides us in understanding if and when guardianship should be considered and the requirements.
This list is by no means exhaustive, but is based on important information the Morgridge College students discovered when researching adult services for those with Fragile X syndrome.
As part of the NFXF’s ever-increasing focus on services for adults, we are pleased to bring you this 30-minute slide and audio presentation by Dr. Marcia Braden, titled, “Moving from Pediatrics to Adult Care.”
Behavioral outbursts and aggression are critical incidents in the home or the community. For biological mothers of children with FXS who carry the premutation gene, there is the added predisposition to anxiety, as well as other emotional concerns, which can amplify their response to these critical incidents.
Jayne Dixon Weber shares the many lessons her son with Fragile X syndrome has taught her family over the years, beginning with the day of his diagnosis
Family caregivers play a critical role in managing the needs of individuals with FXTAS throughout the illness. People with FXTAS rely on caregivers for a wide range of support — preparation of meals, household chores, transportation, medications, bathing, dressing, feeding, physical, emotional and social care, and managing family money.
Family discussions about the many aspects of Fragile X cannot be boiled down to a single talk. Families do best when there is open and honest communication about Fragile X and we have some tips to help.
When children enter the relationship, couples must adapt to their new roles as parents while trying to stay connected as lovers and partners. And when one or more of the children has Fragile X syndrome, there is a whole new set of challenges.