Our mission has always been and continues to be providing unwavering support for every family affected by Fragile X, while relentlessly pursuing a cure. As a patient advocacy organization committed to facilitating research, we wear many hats. We define our role in research as “research facilitation.”
The NFXF Research Facilitation Portfolio
Our Research Facilitation portfolio partners with researchers from initial concept through dissemination of results. We support this mission through the NFXF Research Readiness Program, our services menu, focused projects, and advocacy.
Our mission is to advance scientific understanding and treatment research in Fragile X-associated disorders. We aim to accelerate effective treatments and interventions for the FX community.
Treatments include medications, language, speech, behavioral, and other interventions that improve quality of life for individuals and families. We advance treatment research by supporting researchers through our Research Readiness Program and advocating for federal funding.
Our objective is to be the preferred contact and broker for Fragile X researchers and development leaders. We do this by:
Learn more in our video featuring Hilary Rosselot, NFXF executive director, and Dr. Craig Erickson, NFXF Scientific & Clinical Advisory and Clinical Trials committees member.
The Four Phases of the Research Readiness Program
Our collaborative pipeline supports research development and execution in Fragile X-associated disorders. The program connects researchers with experts and families to ensure research is scientifically sound, relevant, and patient-centric. We recommend engaging early for support from concept through completion.
The program has four phases designed to build relationships and integrate researchers into the NFXF community:
1. Initial Contact
- Director of Research Facilitation Screening: Reach out to Anna De Sonia via email at research@fragilex.org to discuss your desired outcomes and research focus.
- Review Committee Assignment: You’ll be assigned to a committee of Fragile X experts chosen based on their relevant interests and expertise.
2. Committee Reviews
- Concept Reviews: Conduct up to two reviews with experts and families before funding and IRB approval. These sessions discuss big-picture aspects to guide protocol design. Final recommendations are summarized in an anonymized report.
- Invitation to Donate: You are invited to donate or pay for consultation services to support the NFXF mission of helping families living with Fragile X.
- Protocol Design: Work with your committee to build a strong foundation before approaching IRB and applying for grants.
3. NFXF + Researcher Partnership
- NFXF Certification: Once approved through committee consultations, we promote your research to the community.
- Personalized Engagement Plan: We create a plan addressing:
- Study details for the Research Opportunities portal.
- Recruitment and results dissemination.
- Additional research facilitation servicess.
4. Ongoing Collaboration
- We maintain open communication and update one another regularly.
- We reevaluate the engagement plan as needed.
Questions?
If you have questions about anything research-related, we’d love to hear from you! You can reach out to Anna De Sonia directly at research@fragilex.org.