The NFXF Blog
ACTION ALERT:
Protecting Medicaid
Action Alert: Help protect Medicaid, a program that provides healthcare coverage and support services for individuals, including those in the Fragile X community.
Study: Language and Executive Function in Females with ASD or FXS
Researchers at the Waisman Center, University of Wisconsin-Madison, and the MIND Institute, University of California Davis, are conducting a research study for female girls living with FXS or ASD. The study is looking at how language and executive function affect academic skills like literacy and social skills in girls living with FXS.
Assessing Parental/Guardian Experiences with Genetic Counseling for Fragile X Syndrome
Molly Mizenko, a student researcher in Indiana University’s Genetic Counseling Graduate Program, is conducting a survey to explore the experiences of parents and guardians who have received genetic counseling following their child’s diagnosis of Fragile X syndrome.
Top Financial Mistakes to Avoid for Special Needs Dependents— Webinar
Kelly Piacenti and Jerry Hulick joined us for the next topic of the NFXF Webinar Series - Top Financial Mistakes to Avoid for Special Needs Dependents. They shared common financial decisions that could impact your loved one's future benefits and supports.
Peer-Reviewed Medical Research Program’s FY25 Funding Opportunities for Researchers — Webinar
Dr. Kathryn Argue share tips for applying for PRMRP funding with Fragile X professionals.
Research Funding Opportunity from CDMRP/PRMRP for Fiscal Year 25
Announcing FY 2025 federal research funding opportunities across two award categories available for all Fragile X-associated conditions and disorders.
Little Rhody Warriors Host Successful X Strides Fragile X Awareness Walk
Little Rhody Warriors families held their second annual “Fragile X Awareness Walk” on May 18 in Warwick, Rhode Island. More than 50 family members, caregivers, and friends participated in this X Strides event.
Rhode Island Area Fragile X Family Night Out!
Rhode Island families gathered for a night out at a local restaurant on April 12th to share experiences and stories.
Harmony Biosciences RECONNECT Trial Reaches Enrollment Goal!
Harmony Biosciences shares that they have reached their enrollment goal for the Phase 3 RECONNECT trial and screening into the trial has officially closed.
Fragile X Advocacy Newsletter – April 2025
Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
New Resources– Genetics of Fragile X
The Genetics of Fragile X can be confusing. We’ve developed a series of handouts to help explain how changes in the FMR1 gene happen, how Fragile X is inherited, and what CGG repeat ranges mean for individuals and families.
Study: Examining Factors that Influence Expectations for Individuals with an Intellectual or Developmental Disability (IDD)
Dr. Grace Francis from George Mason University is conducting an online survey to explore factors that affect the expectations for individuals with intellectual or developmental disabilities (IDD), including Fragile X syndrome (FXS), after they finish school.