Missy Zolecki
Missy joined NFXF team in 2018 after being an active volunteer since 2010. Missy organized several fundraisers and educational workshops while serving in her volunteer role. Missy is the mother of three children. Her eldest son, Matt, lives with Fragile X syndrome. Prior to joining the NFXF team, Missy had worked as a nurse for more than 20 years. She enjoys traveling and spending time with family and friends.
More from the Author
Our latest advocacy update breaks down what has changed, what hasn’t, and why both federal and state advocacy matter.
Learn what recent federal actions related to Olmstead, the ADA, and Section 504 mean for individuals with disabilities and Fragile X families.
Updates about recent federal policy discussions and what they may mean for Fragile X research, healthcare, education, and support services.
Learn about CDMRP funding opportunities for research on Fragile X-associated conditions and disorders, including application deadlines, key award mechanisms, and how the NFXF supports researchers.
Fragile X has once again been included in the FY26 Peer-Reviewed Medical Research Program (PRMRP) authorized topic list. This continued inclusion ensures that researchers can apply for Department of War awards supporting innovative, high-impact Fragile X research of clear scientific merit.
Action Alert: Help protect Medicaid, a program that provides healthcare coverage and support services for individuals, including those in the Fragile X community.
Announcing FY 2025 federal research funding opportunities across two award categories available for all Fragile X-associated conditions and disorders.
Valuable resources to share with your care team or anyone seeking a better understanding of the genetics of Fragile X, including the Fragile X premutation, and answer questions about genetic testing and genetic counseling.
Ensure continued protection for all students, especially members of the Fragile X community.
The Congressionally Directed Medical Research Program could face a 57% reduction in funding with the proposed continuing resolution.
We understand the uncertainty surrounding recent developments, especially potential changes to federal funding that could impact the Fragile X community. We closely monitor the situation and continue working with our strategic partners to stay informed.
The return after a long break can be a difficult transition for anyone, especially an individual living with FXS. With thoughtful planning and a compassionate approach, the entire support team can help ease the process.
Read and share the latest Fragile X Advocacy Newsletter edition with your Members of Congress offices!
More than 50 families and caregivers participated, including heading to the park splash pad to cool off afterward.
Nancy Carlson and the NFXF Heartland Chapter — Iowa and South Dakota hosted their ninth annual Bike To X Out Fragile X on Saturday, June 1, 2024, in Des Moines, Iowa.
Organized by the Western Massachusetts Fragile X chapter this event brought together 26 competitive teams and 150 attendees and raised $4,000.
We heard how challenging it is to find quality dentists for patients living with FXS. As a result, we searched and found some helpful resources.
The November 2023 issue of the Fragile X Advocacy Newsletter! Please read and share it with your members of Congress!
NFXF Greater Chicago Chapter hosted and organized two local events to bring together families living with Fragile X syndrome.
NFXF Western Massachusetts Chapter hosted and organized local events to unite the Fragile X community.
Updates on our 2023 Asks, current letters of support, legislation that has been introduced, and legislation we are monitoring.
NFXF team member Missy Zolecki shares her recent experience as a consumer reviewer for congressionally directed federal funding for Fragile X research.