Community Support

//Community Support
Community Support 2018-10-02T15:04:46+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:

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:

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

MO LINKS Group making X sign

Members of Fragile X Resource Center of Missouri, an NFXF Chapter


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:

Contacting the CSN

If you have questions about the CSN or are looking for information on a local group, please email

Connect With Your Local Chapter:

Fragile X Resource Center of Missouri NFXF Chapter St. Louis, Missouri
NFXF Greater New York City Chapter NFXF Chapter Brooklyn, New York
NFXF Connecticut Chapter NFXF Chapter West Hartford, Connecticut 860-233-1904 |
NFXF Heartland Chapter - Iowa and South Dakota NFXF Chapter Ankeny, Iowa
NFXF Kansas Chapter NFXF Chapter Olathe, Kansas
NFXF Louisiana Chapter NFXF Chapter Marksville, Louisiana 318-500-9315 |
NFXF Vermont Chapter NFXF Chapter Jericho, Vermont

NFXF Central Alabama Chapter NFXF Chapter Hoover, Alabama
NFXF Central California Chapter NFXF Chapter Paso Robles, California
NFXF Central Illinois Chapter NFXF Chapter Le Roy, Illinois, USA

NFXF Wisconsin Chapter NFXF Chapter Oak Creek, Wisconsin 414-690-3359 |
NFXF Arizona Chapter NFXF Chapter Phoenix, AZ 85044
NFXF Northern California Chapter NFXF Chapter San Francisco, California
NFXF Minnesota Chapter NFXF Chapter St. Cloud, Minnesota
NFXF Southeast Pennsylvania Chapter NFXF Chapter Berwyn, Pennsylvania
NFXF Greater Atlanta Chapter NFXF Chapter Roswell, Georgia
NFXF Nebraska Chapter NFXF Chapter Omaha, Nebraska
NFXF New Jersey Chapter NFXF Chapter Morganville, New Jersey
NFXF South Carolina Chapter NFXF Chapter Columbia, South Carolina
NFXF Tri-State Chapter NFXF Chapter Erlanger, Kentucky 859-342-8150 |
NFXF Western Massachusetts Chapter NFXF Chapter Hadley, Massachusetts 413-584-1859 |
NFXF Washington State Chapter NFXF Chapter Olympia, Washington
NFXF Virginia Tidewater Chapter NFXF Chapter Virginia Beach, Virginia

757-270-3949 |

NFXF Oregon Chapter NFXF Chapter Salem, Oregon

NFXF Virginia Peninsula Chapter NFXF Chapter Newport News, VA, USA | 757-645-7614 

NFXF Northern Virginia Chapter NFXF Chapter Oak Hill, VA, USA | 703-283-9050 | 703-999-7456

Colorado Fragile X Community Partner Centennial, Colorado 720-841-5489 |
Families for Fragile X Community Partner Coral Gables, Florida 305-992-4430 ||
Fragile X Alliance of Ohio Community Partner Solon, Ohio
Fragile X Alliance of Texas - Houston Community Partner Kingwood, Texas

Fragile X Alliance of Texas - San Antonio Community Partner San Antonio, Texas

Fragile X Association of Michigan Community Partner Sterling Heights, Michigan 313-881-3340 ||
Fragile X Association of Southern California Community Partner Burbank, California 818-754-4227 ||
Texas Fragile X Association Community Partner Irving, Texas 972-757-8939 |
North Carolina Fragile X Foundation Community Support Network Community Partner Cary, NC, USA


Greater Chicago Fragile X Parent Contact Plainfield, Illinois
Maryland Fragile X Resource Group Parent Contact Brookville, Maryland
North San Diego Parent Contact San Diego, California 760 859 6643 |
Marie Horowitz Parent Contact New City, New York 845-638-2498 |
Steve & Gwen Jagde Parent Contact Ardsley, New York 914-674-4480 |
Nancy Hertzig Parent Contact Tilson, New York 845-658-9201 |
Katie Berladi, MS, CCC-SLP Parent Contact Pittsburgh, Pennsylvania 412-327-6654 |
Leslie Bobrowski Parent Contact Cumberland, Rhode Island 401-658-1936 |
Darlene Donovan Parent Contact Derry, New Hampshire 603-965-3502 |
Tricia Crew Parent Contact French Lick, Indiana 812-936-7170 |
Barbara & Phil Porterfield Parent Contact Charles Town, West Virginia

304-725-3279 |

Joey Christoff & Catherine Frey Parent Contact Fort Wayne, Indiana 260-466-1223 |
Lewis & Lynne Wolfe Parent Contact Georgetown, Kentucky 502-863-6653 |
April White Parent Contact Columbia, Tennessee 931-626-1721 |
Jerri Deem Parent Contact Marietta, Ohio 740-336-9165 |
Beth_Lake Parent Contact West Harrison, Indiana 812-637-3192 |
Gwen McCloud Parent Contact Woodleaf, North Carolina 704-307-9471 |
Leeanne Rau Parent Contact Birmingham, Alabama 205-978-4230 |
Randy Green Parent Contact Boynton Beach, Florida 561-509-6420 |
Rosie Perez Parent Contact Miami, Florida 305-342-6415 |
Sheri Dickerson Parent Contact Blue Mountain, Mississippi 662-587-0438 |
Bonni Ortegon Parent Contact San Antonio, Texas 210-685-7972 |
Tammy Jones Parent Contact Boise, Idaho 208-830-6666 |
Amy_Young Parent Contact Honolulu, Hawaii 703-626-1282 |
Sonja Goedde Parent Contact Anchorage, Alaska 907-250-3969 |
Ginger Stringer Parent Contact Colorado Springs, Colorado 719-391-2249 |
Nanette McCall Parent Contact Sparks, Nevada 775-331-7248 |
Fragile X of Central Arkansas Parent Contact Vilonia, Arkansas

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