Community Support

//Community Support
Community Support 2019-05-30T21:40:44+00:00

Community Support

NFXF Community Support Network Article Image

How We Can Help

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 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 ET
Or email: treatment@fragilex.org

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.

Community Support Network | CSN

The bedrock of the NFXF community is our Community Support Network. CSN is our mission delivery arm and is comprised of volunteer-led chapters, community partners, and parent contacts. The dedicated parent volunteers who lead the CSN provide emotional and educational support to families and individuals living with Fragile X.

To find your local chapter: Check out the interactive map below that will help you locate the nearest community resource. If there isn’t one in your area, we can help you start one. To let us know you are interested, just email: csn@fragilex.org

Volunteer-Led Chapters

Community (volunteer-led) chapters are officially affiliated with the NFXF. Chapters organize fundraisers to support the mission, provide educational and awareness opportunities to families, and support Fragile X Clinics:

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

Community Partners

Community partners are independent, tax exempt organizations that collaborate with the NFXF to support the Fragile X Community, raise awareness, and offer educational opportunities to families in their geographic area. These groups are primarily run by volunteer parents, and they are not formally affiliated with the NFXF.

Parent Contacts

Parent contacts are volunteers (individuals or groups) who are available to help answer questions and offer support, especially to those with newly diagnosed children.

Getting Involved

If you are not yet a member of your local CSN, now is the time to reach out! Get involved with activities like Nights Out that focus on moms, dads—even siblings. Attend social activities like picnics, bowling outings, and trips to museums. Participate in local education opportunities through the CSN Learning Series. Sign up for an X Strides walk near you and help raise funds to support the mission. Join others in support group meetings and get to know others who understand the issues you are facing. To volunteer, please contact us at volunteer@fragilex.org.

MO LINKS Group making X sign

Members of Fragile X Resource Center of Missouri

Volunteering

Your local chapter welcomes you to get involved by volunteering to help organize activities. Getting involved in the CSN is also a wonderful way to give back to the Fragile X community. You will find out how much fun it is to fundraise with others through walks, flower sales, pumpkin parades, and more. Many of our CSN members provide the community with educational seminars, help with IEPs, and even organize trips to the National Fragile X Foundation’s Advocacy Day.

Sibling & Self-Advocate Network

The NFXF offers opportunities for individuals and siblings of individuals living with Fragile X to connect. 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 & Self-Advocate Network is for you! Contact: sibselfrl@fragilex.org

Contacting the CSN

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

Connect With Your Local Chapter:

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Title Address Description Link

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

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