The NFXF Blog
Premutation Conference Brings Together World’s Leading Experts
The 4th annual Fragile X premutation conference was held in the Netherlands in September. Entitled the Fourth International Conference of FMR1 Premutation: Basic Mechanisms, Clinical Involvement and Therapy, it was a gathering of researchers from around the globe to share their current research on Fragile X premutation disorders and think about what is next. The NFXF supported the conference.
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.
What a successful year for NFXF Advocates
NFXF Advocates have had a very successful year! Our advocacy efforts focus on ensuring substantial federal investments in Fragile X research, policies that create opportunities for those living with Fragile X to have the best possible life, and an awareness in Congress of Fragile X. Here are some highlights of our efforts this year.
X Strides Heartland – Another Success
Over 145 Fragile X families, friends, and supporters joined together for the 2nd Annual X Strides Heartland in Iowa. Funds were raised, families were connected, and awareness of Fragile X was raised.
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.
Preventive Care Services in Fragile X Syndrome
Research Summary // About nine out of 10 children and young adults with Fragile X syndrome received the immunizations recommended by CDC between birth and 18 years of age.
Faces of Fragile X: Spencer
Meet Spencer, who has Fragile X syndrome. He loves Power Rangers and did a spectacular job presenting at the 16th NFXF International Fragile X Conference.
A Workplace Fundraiser You’ll Want to Copy
Matt Faruolo wanted to do something to raise awareness about Fragile X, so he decided to host a weeklong fundraising event at work. Here’s how he did it.
New Research Documents Other Premutation Carrier Issues
While two Fragile X-associated disorders affecting premutation carriers are well documented and accepted by the medical community, other effects of the premutation are a source of debate among the medical community because there has [...]
Early Development of Young Children with Fragile X in North Carolina
RTI Int’l and UNC at Chapel Hill are conducting a research study to learn more about early development of young children with Fragile X in North Carolina, and the experiences of their parents when obtaining the diagnosis and early intervention services.
Joshua’s Mom on Participating in Fragile X Clinical Trials
Diane and her son Joshua volunteered for a clinical trial a little over a year ago. In this heartwarming video, his mom shares how their family made the decision to participate, and what the experience has been like so far.
Faces of Fragile X: Aaron
I tell people Aaron is not just my son, he's my universe! He is 40 years old. He was one of the first to be diagnosed. He has had many therapies that have ultimately helped him. He is funny and bright in so many ways.