Giving Tuesday – Our Gift to You
On this Giving Tuesday, we want to give you a gift of thanks - and one we believe will help you on your own Fragile X journey.
All Love Threads — Clothing Designed to Benefit the Special Needs Community
Since the birth of his brother Filippo, Guido Raponi has constantly looked for ways to help support the Fragile X and special needs communities. The idea for All Love Threads was born when he looked into his closet and saw a number of unworn, fundraising t-shirts and sweatshirts and saw an opportunity to create fashionable awareness clothing.
One Fragile X Experience: Carrier & Mom Answers FAQs — Video
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.
Carolyn and John Tomberlin Provide Matching Gift at International FX Conference Live Appeal
Carolyn and her husband John kicked off the Live Appeal at the NFXF International Fragile X Conference in July with a one-to-one matching challenge of up to $30,000.
Housing Options for Adults With Fragile X Syndrome — Webinar
Adult services may be limited and difficult to access, so how does a parent deal with that nagging question that keeps them up at night: What will happen when I’m gone?
NFXF Western MA Chapter Hosts Cork and Cafe Fundraiser
After a two-year pause due to COVID, NFXF Western Massachusetts Chapter raises $4,000 at 4th annual wine tasting fundraiser.
Heartland Chapter Hosts Annual X-Strides Run/Walk Fundraiser
NFXF Heartland - Iowa | South Dakota Chapter raises $6,500 at its annual X Strides Run/Walk event at the Briarwood Gold Course in Ankeny, IA.
Using Visual Strategies to Support Daily Function — Presentation
This session builds on treatment best practices and makes the concept of visual supports tangible and applicable across ages and stages of life for those with FXS.
Diagnosis and Treatment of Fragile X-Associated Tremor Ataxia Syndrome — Presentation
In this conference session, Dr. Deborah Hall provides a clinical overview of the diagnosis and treatment of FXTAS, including a summary of its clinical features, treatment options, and information about in-vitro fertilization.
Lifetime Channel Airs “Behind the Mystery of Fragile X Syndrome”
Watch this segment from Lifetime’s daily morning show, The Balancing Act, “Behind the Mystery of Fragile X Syndrome: A Genetic Disorder That Can Cause Learning and Behavior Challenges.”
Sibling Perspective Q&A — Panel
Panelists look at and discuss FXS from the perspective of siblings in the household.
Behavior Discussion and Q&A — Panel
With our panel of experts Rebecca Shaffer, Lauren Schmitt, Tracy Murnan Stackhouse, Elizabeth M. Berry-Kravis, and Randi J. Hagerman.
Medication for Fragile X: Anxiety, Irritable Behaviors, and Aggression — Panel
This session discusses the approved medications available to support behavior conditions associated with fragile X syndrome.
Assistive Technology: Tackling the Trends and the Tried & True — Presentation
Learn how Assistive Technology (AT) can be the vehicle affording the opportunity for a person with FXS to be more fully included in play, school, home, work, and the community.
Interpreting Clinical Trial Headlines and Announcements in Fragile X Syndrome — Presentation
Explore examples of recent announcements and headlines focused on treatment development in Fragile X syndrome. Presented by Elizabeth Berry-Kravis, MD, PhD, and Craig A. Erickson, MD.