Living With Fragile X | NFXF (original) (raw)

Skip to content

Living With Fragile X

Home/Living With Fragile X

Living With Fragile XDan Whiting2022-11-21T15:32:59-05:00

Living With Fragile X

The best information and resources to help you live — and thrive — with Fragile X.

Living With Fragile X

The best information and resources to help you live — and thrive — with Fragile X.

Living With Fragile X is where you’ll find the latest, most helpful, funniest, or most popular content on our website among families already living with Fragile X. But this is also a place for newly diagnosed individuals or families, whether it’s a child diagnosed with Fragile X syndrome, or whole families learning they’re all potential carriers. (By the way, if you’re either of these, we invite you to get in touch with us when you’re ready.)

Facilitating Research

Our research facilitation efforts over the past year have shown us there’s a lot of work to do to advance treatment research in Fragile X. We want to advance scientific understanding and treatment research in Fragile X-associated disorders. This is a big mission and means we need to look at research from many angles: Treatments are not just medications, they can be language, speech, behavior, and other interventions that can be just as impactful and can change the quality of life for individuals and families living with Fragile X.

Each of the programs and services under the NFXF Research Facilitation portfolio support scientific understanding and the advancement of treatment research in Fragile X-associated disorders. We make a point of sharing what is going on in our field and why it matters.

newly diagnosed?

Yes, my child was diagnosed with Fragile X syndrome.

newly diagnosed?

Yes, my child was diagnosed with Fragile X syndrome.

Watch

Learn more about NFXF’s work in research facilitation in this presentation from the 2020 17th NFXF International Fragile X Conference Virtual Series featuring Hilary Rosselot and Dr. Craig Erickson, NFXF Scientific & Clinical Advisory and Clinical Trials committees member.

Hilary Rosselot
Director
Research Facilitation
National Fragile X Foundation

Dr. Craig Erickson
Medical Director
Fragile X Research & Treatment Center
Cincinnati Children’s Hospital

Watch

Learn more about NFXF’s work in research facilitation in this presentation from the 2020 17th NFXF International Fragile X Conference Virtual Series featuring Hilary Rosselot and Dr. Craig Erickson.

Hilary Rosselot is the director of research facilitation at NFXF, and Dr. Craig Erickson is the medical director of the Fragile X Research and Treatment Center at Cincinnati Children’s Hospital. Dr. Erickson is also a member of NFXF’s Scientific & Clinical Advisory and Clinical Trials committees.

We Can’t Do It Without You

Not sure where to start?

Look for these symbols:

Individuals, families, and caregivers

Doctors and other treatment professionals

Research 101: What is Research?

The Ultimate Guide for All Families Living with Fragile X

Research is all about questions. Not just the scientists’ questions — better known as hypotheses — but questions from potential research participants. What is research? Why is it important? The list goes on and on. The NFXF explores these questions and other important research concepts, including our new Research 101 eBook.

NFXF Research Projects

Our Current Focused Projects Portfolio

The NFXF is committed to promoting scientific and treatment research advancements for Fragile X-associated disorders through research facilitation, including our NFXF Summer Scholar Research Awards for up-and-coming researchers.

Other current focused projects include: FORWARD Registry & Database, NFXF Data Repository, NFXF-Led Patient-Focused Drug Development meeting, International Fragile X Premutation Registry, Bringing Your STX209 Data Home, and Research Results Roundup.

MyFXResearch Portal

Find Your Next Research Opportunity

The NFXF is devoted to providing the most up-to-date research opportunities for individuals and families. MyFXResearch provides a user-friendly experience, allowing you to search research opportunities, find the right fit, and contact the study team — all at your fingertips.

There really is something for everyone: surveys, studies, clinical trials, oh my!

NFXF Research Readiness Program

Building Meaningful Partnerships With All Researchers

Learn more about our collaborative pipeline to support the development and execution of research in Fragile X-associated disorders.

Our Research Readiness Program provides every researcher in the Fragile X field the opportunity to engage with experts and families to ensure proposed research is scientifically sound, relevant, and patient-centric. This innovative program grounds us in what research is about — creating meaningful change and hope for families living with Fragile X.

The Fragile X Clinical & Research Consortium

Locate a Fragile X Clinic Near You

Created in 2006 in response to the growing needs of families, each Fragile X clinic is staffed by knowledgeable specialists experienced in the evaluation and treatment of the three identified Fragile X conditions: Fragile X syndrome, Fragile X-associated tremor/ataxia syndrome, and Fragile X-associated primary ovarian insufficiency.

Treatment Recommendations

Consensus Documents on Treatments and Interventions for Fragile X

We are committed to supplying families — as well as researchers, teachers, doctors, and other professionals — with updated information on current treatment guidelines and recommendations with help from professional and parent members of the Fragile X Clinical & Research Consortium.

Topics include: FXS, FXTAS, FXPOI, autism, behavioral issues, hyperarousal, physical problems, seizures, sensory integration, sleep, toileting, assessment and genetic counseling, educational guidelines, adult transition resources, medications, complementary and alternative therapies, and family support and resources.

Questions?

If you have questions about anything research-related, we’d love to hear from you! You can reach out to Hilary Rosselot directly, or submit your question or comment through our contact form.

Research Facilitation

Resources for Families

Links: On all pages (sidebar?)

Fragile X Syndrome

Fragile X Premutation

Webinars and Videos – Not sure how yet, list with links?

Research Opportunities – Page with relevant content

Treatment Recommendations – Link to the page? Or a new page (create some type of global container)?