No Tears for Fears in the School Age Years: IEPs — Presentation
This family-friendly presentation focuses on considerations for school-age children with Fragile X syndrome. Presented by Kerrie Lemons Chitwood, Laura Greiss Hess, and Anne Hoffmann.
Starting and Monitoring Medications in Fragile X Syndrome — Presentation
Learn how to navigate medication strategies and approaches for children with FXS. Presented by Karen Regan, RN, and Nicole Tartaglia, MD.
Discovering Your Young Adultʼs Strengths for a More Satisfying Career Path
First jobs are hard, and as a young adult with Fragile X syndrome it may be nearly impossible without a little help from parents and others in their lives to help them recognize their own strengths.
8 Employee Attributes to Teach Your Young Adult
Getting a new job is exciting, but young adults with Fragile X syndrome need to also understand what's expected of them at a workplace. Help them prepare by first understanding these eight guidelines.
Talking with Your Daughter About Her Fragile X Syndrome Diagnosis
Are you wondering when and how to talk to your daughter about her Fragile X syndrome diagnosis? If so, you are not alone. Here are some strategies to help in talking about your daughter’s FXS diagnosis with her.
Employment Opportunities for Your Young Adult
Helping your young adult transition out of school and into a new job can be overwhelming, we have some tips and resources to make it a little easier for both of you.
Tips for Beginning the Moving Out Process with Your Young Adult
Helpful tips and insight into various housing options, sources of funding, and points to consider before your young adult's big move.
Tips for Flying on an Airplane
Traveling with your young or adult child with Fragile X syndrome on an airplane can be very stressful for both of you. These tips are provided by parents based on their experiences with their own children. Find what works for you, your child, and your family.
Using Mindfulness and Acceptance Techniques to Reduce Stress — Webinar
Dr. Anne Wheeler provides an overview of stress vulnerability in women with (and without) a premutation, and how mindfulness-based techniques can be helpful for increasing mindfulness, reducing stress, and improving overall well-being.
NFXF Webinar Series: Fragile X Syndrome
Dr. Nicole Tartaglia joins us to discuss Fragile X syndrome (FXS). She covers everything from brief descriptions of the Fragile X-associated disorders, such as FXTAS and FXPOI, to details about FXS.
Stopping the Stuffing — Therapy Programs for You and Your Child
If you’re the parent of a child with Fragile X syndrome, you’re probably very familiar with mouth stuffing. Mouth stuffing for kids with FXS is usually an adaptive means of trying to succeed with eating.
Fragile X Syndrome Self-Advocates Share Their Challenges and Triumphs — Presentation
One of the most common questions related to Fragile X is what limitations does a person with Fragile x syndrome have? Meet Allison Cohen, Michael Cohen, Doug Cooper, Aaron Heisel, Samantha Rhodes, Joshua Rocker, Jodi Selinger, Spencer Shelton, and Cassie Stringer.
Expert Panel Discussion on Young Children With FXS — Presentation
A discussion of the issues around caring for young children with Fragile X syndrome, including speech development, integrating with their typical siblings, occupational therapy, and behavioral issues. With Anne Hoffmann, Jennifer Epstein, Jeanine Coleman, and Tracy Murnan Stackhouse.
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.
How to Prepare for a Telehealth Visit
Drs Rebecca Shaffer and Ernie Pedapati tell you how to prepare for your telehealth visit, including behavioral checkups. They are with Fragile X Clinic at Cincinnati Children's Hospital. Their advice is applicable to all visits.