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 ET

Or email: treatment@fragilex.org

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

The Community Support Network (CSN) is the mission delivery arm of the NFXF, 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.

Chapters are volunteer led groups that 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.

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 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, submit volunteer@fragilex.org.

MO LINKS Group making X sign

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

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, etc. 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.

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

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 and Self-Advocate Group is for you! Contact: sibselfrl@fragilex.org

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.

ZIP / Address:
Radius:
Category:
TitleCategoryAddressDescription
Fragile X Resource Center of Missouri NFXF Chapter St. Louis, Missouri stlouis@fragilex.org
NFXF Greater New York City Chapter NFXF Chapter Brooklyn, New York NewYorkCity@fragilex.org
NFXF Connecticut Chapter NFXF Chapter West Hartford, Connecticut 860-233-1904 | Connecticut@fragilex.org
NFXF Heartland Chapter - Iowa and South Dakota NFXF Chapter Ankeny, Iowa Heartland@fragilex.org
NFXF Kansas Chapter NFXF Chapter Olathe, Kansas Kansas@fragilex.org
NFXF Louisiana Chapter NFXF Chapter Marksville, Louisiana 318-500-9315 | CentralLA@fragilex.org
NFXF Vermont Chapter_ NFXF Chapter Jericho, Vermont Vermont@fragilex.org
NFXF Central Alabama Chapter NFXF Chapter Hoover, Alabama CentralAL@fragilex.org
NFXF Central California Chapter NFXF Chapter Paso Robles, California CentralCA@fragilex.org
NFXF Central Illinois Chapter NFXF Chapter Canton, Illinois CentralIL@fragilex.org
NFXF Wisconsin Chapter NFXF Chapter Oak Creek, Wisconsin 414-690-3359 | Milwaukee@fragilex.org
NFXF Arizona Chapter NFXF Chapter Phoenix, AZ 85044 arizona@fragilex.org
NFXF Northern California Chapter NFXF Chapter San Francisco, California NorthernCA@fragilex.org
NFXF Minnesota Chapter NFXF Chapter St. Cloud, Minnesota Minnesota@fragilex.org
NFXF Southeast Pennsylvania Chapter NFXF Chapter Berwyn, Pennsylvania SoutheastPA@fragilex.org
NFXF Greater Atlanta Chapter NFXF Chapter Roswell, Georgia GreaterAtlanta@fragilex.org
NFXF Nebraska Chapter NFXF Chapter Omaha, Nebraska Nebraska@fragilex.org
NFXF New Jersey Chapter NFXF Chapter Morganville, New Jersey NewJersey@fragilex.org
NFXF South Carolina Chapter NFXF Chapter Columbia, South Carolina SouthCarolina@fragilex.org
NFXF Tri-State Chapter NFXF Chapter Erlanger, Kentucky 859-342-8150 | Cincinnati@fragilex.org
NFXF Western Massachusetts Chapter NFXF Chapter Hadley, Massachusetts 413-584-1859 | WesternMA@fragilex.org
NFXF Washington State Chapter NFXF Chapter Olympia, Washington washingtonstate@fragilex.org
NFXF Southeast Virginia Chapter NFXF Chapter Newport News, Virginia 757-223-6254 | SoutheastVA@fragilex.org
NFXF Oregon Chapter NFXF Chapter Salem, OR, USA

Oregon@fragilex.org

Colorado Fragile X Community Partner Centennial, Colorado 720-841-5489 | denverfragilex@gmail.com
Families for Fragile X Community Partner Coral Gables, Florida 305-992-4430 | michele@familiesforfragilex.org| familiesforfragilex.com
Fragile X Alliance of Ohio Community Partner Solon, Ohio http://fragilexohio.org/
Fragile X Alliance of Texas - Houston Community Partner Kingwood, Texas LaurieBridgesOT@hotmail.com
Fragile X Alliance of Texas - San Antonio Community Partner San Antonio, Texas shannon.texasfx@gmail.com
Fragile X Association of Michigan Community Partner Sterling Heights, Michigan 313-881-3340 | contact@fxam.org| www.fxam.org
Fragile X Association of Southern California Community Partner Burbank, California 818-754-4227 | info@fraxsocal.org|https://fraxsocal.org
Texas Fragile X Association Community Partner Irving, Texas 972-757-8939 | www.txfx.org
NC Fragile X Foundation Community Support Network Community Partner Cary, NC, USA

info@ncfragilex.org

Greater Chicago Fragile X Parent Contact Plainfield, Illinois Chicago@fragilex.org
Maryland Fragile X Resource Group Parent Contact Brookville, Maryland CentralMD@fragilex.org
North San Diego Parent Contact San Diego, California 760 859 6643 | sllewellyn721@gmail.com
Marie Horowitz Parent Contact New City, New York 845-638-2498 | mehem10475@optonline.net
Steve & Gwen Jagde Parent Contact Ardsley, New York 914-674-4480 | allwsontherun@aol.com
Nancy Hertzig Parent Contact Tilson, New York 845-658-9201 | nhertzig@yahoo.com
Katie Berladi, MS, CCC-SLP Parent Contact Pittsburgh, Pennsylvania 412-327-6654 | PittsburghCSN@gmail.com
Leslie Bobrowski Parent Contact Cumberland, Rhode Island 401-658-1936 | providence@fragilex.org
Darlene Donovan Parent Contact Derry, New Hampshire 603-965-3502 | newhampshirefx@gmail.com
Tricia Crew Parent Contact French Lick, Indiana 812-936-7170 | tricia.crew812@gmail.com
Barbara & Phil Porterfield Parent Contact Charles Town, Wet Virginia 304-725-3279 | fxproject@hotmail.com
Joey Christoff & Catherine Frey Parent Contact Fort Wayne, Indiana 260-466-1223 | cbfrey@hotmail.com
Lewis & Lynne Wolfe Parent Contact Georgetown, Kentucky 502-863-6653 | wolfepac@bellsouth.net
April White Parent Contact Columbia, Tennessee 931-626-1721 | aewhite10@gmail.com
Jerri Deem Parent Contact Marietta, Ohio 740-336-9165 | isaiah40-31@suddenlink.net
Beth_Lake Parent Contact West Harrison, Indiana 812-637-3192 | darianlake@earthlink.net
Gwen McCloud Parent Contact Woodleaf, North Carolina 704-307-9471 | gweniee99@gmail.com
Leeanne Rau Parent Contact Birmingham, Alabama 205-978-4230 | timandleanne@gmail.com
Randy Green Parent Contact Boynton Beach, Florida 561-509-6420 | mathmattx123@yahoo.com
Rosie Perez Parent Contact Miami, Florida 305-342-6415 | rosie@thexfamily.org
Sheri Dickerson Parent Contact Blue Mountain, Mississippi 662-587-0438 | sherid@ripleycable.net
Bonni Ortegon Parent Contact San Antonio, Texas 210-685-7972 | fxalliance.southtexas@gmail.com
Tammy Jones Parent Contact Boise, Idaho 208-830-6666 | rdjsevens@gmail.com
Amy_Young Parent Contact Honolulu, Hawaii 703-626-1282 | adiane79@gmail.com
Sonja Goedde Parent Contact Anchorage, Alaska 907-250-3969 | serra1313@msn.com
Ginger Stringer Parent Contact Colorado Springs, Colorado 719-391-2249 | gingerstringer@yahoo.com
Nanette McCall Parent Contact Sparks, Nevada 775-331-7248 | 4macs@charter.net
Fragile X of Central Arkansas Parent Contact Vilonia, Arkansas CentralAR@fragilex.org

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

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