Community

NFXF Community Support Network Article Image

Community is one of the three pillars of what the National Fragile X Foundation exists to do. Knowing there are others impacted by Fragile X out in the world and sharing your challenges and triumphs is incredibly empowering.

We urge you to connect with others on FacebookTwitter, and Instagram. The advice, personal stories and friends you make will keep you strong, competent and confident in dealing with all things Fragile X.

Additionally, we at the NFXF are here to help provide support and education. Do you have a question? Do you need information?

Please call: 800-688-8765 from 9:00 am – 5:00 pm PT

Or email: treatment@fragilex.org

Wherever you are on your journey, the NFXF has a team of people who are here to help you in whatever way works best for you!

But the bedrock of the NFXF community is our Community Support Network.

The CSN is the national volunteer program of the NFXF, comprised of groups typically organized and run by parent volunteers. The CSN provides emotional and educational support to families and individuals living with Fragile X. The CSN chapters organize events that offer support and build awareness for Fragile X in their local communities.

If you are not yet a member of your local CSN, now is the time to get involved! You’ll find all sorts of activities like Nights Out that focus on moms, dads – even siblings. Groups even host picnics, bowling outings and trips to museums. The CSN truly offers you a chance to meet others who understand the issues you’re facing.

The CSN community is organized by region, scroll to the bottom of the page to view an interactive map that will help you locate the nearest CSN group. If there isn’t one in your area, we can help you start one. Just let us know you are interested.

MO LINKS Group making X sign
MO LINKS Group making X sign

Getting Involved

Getting involved in the CSN is also a wonderful way to give back to the Fragile X community. You’ll find out how much fun it is to fundraise with others through walks, flower sales, pumpkin parades, etc. Many of our CSN members provide the community with educational seminars, help with IEP’s and even organize trips to the National Fragile X Foundation’s Advocacy Day, which empowers members.

Sibling & Self-Advocate Group

The NFXF offers a nationwide sibling and self-advocate group for individuals and siblings of individuals living with Fragile X. If you or one of your siblings is living with Fragile X and would like to join a group of like-minded individuals, the Sibling and Self-Advocate Group is for you!

Parent Contacts

If there is not a CSN group located near you, or if you are simply looking for another parent or caregiver to talk to, the NFXF has a list of Parent Contacts you can reach. Parent Contacts are available to help answer questions and offer support, especially to those with newly diagnosed children.

Fragile X Clinic & Research Consortium

If you are seeking medical support related to Fragile X, please visit the Fragile X Clinic & Research Consortium (FXCRC). The FXCRC is partnered with the CSN to bring you both the emotional and medical support that you need.

Contacting the CSN

If you have questions about the CSN or are looking for information on a local group, please email csn@fragilex.org.

The locations on this map are meant only to show the city of each CSN group, not exact locations.