The NFXF Blog
Southeast Pennsylvania X Strides 2019
The cold could not stop X Strides 2019 Southeast Pennsylvania! We had 260 registered, including 17 self-advocates and we raised $29,600 for Fragile X! Thanks to all who ran, walked, or donated to our [...]
Faces of Fragile X: Ross and Brooks
Brooks and Ross are two cool guys-------they are polar opposites, though. Brooks loves his music (loud) and Ross does not like music. Brooks is tough and rugged and Ross is more fragile. Brooks loves being around people and Ross is a loner.
How to Advocate for Fragile X
Gregg Harper, a former Member of Congress, gives you 3 tips to effectively advocate for Fragile X in Congress and anywhere else in government.
Faces of Fragile X: Bryan
Meet Bryan. He has Fragile X syndrome. His sister says, he has interests and needs similar to everyone else. We like to tease each other, go to sporting events, and go swimming.
Postdoctoral Training Program in Intellectual and Developmental Disabilities Research Position Openings
The Waisman Center at the University of Wisconsin-Madison is recruiting postdoctoral trainees. The Waisman Center hosts a Fragile X clinic and conducts research on Fragile X-related disorders, such as this recently published research on other premutation carrier issues.
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.