The NFXF Blog
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.
Together We Give
Help us help them by supporting our mission to serve all those living with Fragile X. Advocacy, education, research, and treatment with the community are at the heart of everything we do.
One Fragile X Experience: Carrier & Mom Answers FAQs
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.
Study: Transitioning to Adulthood with Fragile X syndrome
University of Kansas’ LifeSpan Institute is conducting research to learn about the transition to adulthood for individuals with Fragile X syndrome, as well as the experiences of parents of these young adults.
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.
Webinar: Medication For Individuals With Fragile X Syndrome
Dr. Craig Erickson, Medical Director at the Fragile X Clinic at Cincinnati Children's Hospital Medical Center, joins us for our 10th annual webinar focused on Medication for Individuals with Fragile X Syndrome.
Webinar: Housing Options for Adults With Fragile X Syndrome
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?
Gregg Harper Reminds Us of the Importance of Year-Round Advocacy
Former Congressman and Fragile X Dad, Gregg Harper Reminds Us of the Importance of Year-Round Advocacy.
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.
Healx Shares an update on their IMPACT-FXS trial
Healx updates the Fragile X Community About their Fragile X Program and the IMPACT-FXS trial. The IMPACT-FXS trial is closed and Healx plans to open a new FXS trial in 2023.