Resources

NATIONAL FRAGILE X ORGANIZATIONS:

Fragile X Clinic National Listing: FXCRC logo

A comprehensive listing of the Fragile X Clinics participating in the Fragile X Clinical and Research Consortium (FXCRC) in the United States. More information is available on www.fxcrc.org.  Click here for FX Clinic Listing!

Fraxa Research Foundation

FRAXA Research Foundation

FRAXA’s mission is to accelerate progress toward effective treatments and ultimately a cure for Fragile X, by directly funding the most promising research. FRAXA also supports families affected by Fragile X and raises awareness of this important but relatively unknown disease.

FRAXA was founded in 1994 by three parents of children with Fragile X, Katie Clapp, Michael Tranfaglia MD, and Kathy May, to support scientific research aimed at finding a treatment and a cure for Fragile X. Fragile X research is drastically underfunded, considering its high prevalence, prospects for a cure, and the promise that this research holds for advancing understanding of other disorders like autism, Alzheimer’s disease, and X-linked mental retardation.

National Fragile X FoundationNational Fragile X Foundation

The National Fragile X Foundation unites the Fragile X community to:

  • Enrich lives through educational and emotional support
  • Promote public and professional awareness
  • Advance research toward improved treatments and a cure for Fragile X

FEDERAL RESOURCES:

Social Security Administration

For questions about Social Security, SSI or to apply for Social Security

Medicaid

For questions about Medicaid or to apply for Medicaid

STATE OF OHIO RESOURCES:

LEGAL ISSUES:

Ohio Legal Rights Service

(same website as Ohio Protection and Advocacy)
  • 50 W. Broad Street, Suite 1400
  • Columbus, Ohio 43215-5923
  • Phone: 614-466-7264 or 1-800-282-9181 (Toll free in Ohio only)
  • TTY: 614-728-2553 or 1-800-858-3542 (Toll free in Ohio only)
  • Fax: 614-644-1888
  • http://www.olrs.ohio.gov/

The Ohio Legal Rights Service (LRS) is an independent agency of the State of Ohio. LRS is designated under federal law as the system to protect and advocate the rights of people with disabilities and as the Client Assistance Program under the Rehabilitation Act. The mission of LRS is to protect and advocate, in partnership with people with disabilities, for their human, civil and legal rights.

Wrightslaw

Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law, education law, and advocacy for children with disabilities.

EMPLOYMENT:

Employment First: www.ohioemploymentfirst.org

Ohio Means Jobs: www.ohiomeansjobs.com

Workforce Innovation & Opportunities Act: www.doleta.gov/wioa

RECREATION:

Special Olympics

The mission of Special Olympics is to provide year-round sports training and athletic competition in a variety of Olympic-type sports for children and adults with intellectual disabilities, giving them continuing opportunities to develop physical fitness, demonstrate courage, experience joy and participate in a sharing of gifts, skills and friendship with their families, other Special Olympics athletes and the community.

DISABILITY AND ADVOCACY ORGANIZATIONS:

Ohio Department of Developmental Disabilities

The Ohio Department of Developmental Disabilities (DODD) is responsible for overseeing a statewide system of supports and services for people with developmental disabilities and their families.

The Arc of Ohio

The mission of The Arc of Ohio is to advocate for human rights, personal dignity and community participation of individuals with intellectual and developmental disabilities, through legislative and social action, information and education, local chapter support and family involvement.

OCALI

Ohio Center for Autism and Low Incidence (OCALI) serves families, educators, and professionals working with students with autism and low-incidence disabilities, including autism spectrum disorders, multiple disabilities, orthopedic impairments, other health impairments, and traumatic brain injuries.

OCECD

  • 165 W. Center St., Suite 302
  • Marion, Ohio 43302
  • 1 (800)-374-2806
  • Fax: (740) 383-6421
  • http://www.ocecd.org

The Ohio Coalition for the Education of Children with Disabilities (OCECD) is a statewide nonprofit organization that serves families of infants, toddlers, children and youth with disabilities in Ohio, and agencies who provide services to them.

OCECD’s programs help parents become informed and effective representatives for their children in all educational settings. In addition, youth are assisted to advocate for themselves. Through knowledge about laws, resources, rights and responsibilities, families are better able to work with agencies to ensure that appropriate services are received for the benefit of their sons and daughters.

HEALTHCARE:

Healthy Start (Ohio Dept. of Job and Family Services)

Ohio Medicaid offers three programs for children, pregnant women and families with limited income to get health care. Once eligible for Medicaid, each child (birth through age 20) will have access to an important group of services known as Healthchek.

Healthy Start (also called SCHIP) is a Medicaid program available to:

  • Insured children (up to age 19) in families with income up to 150% of the federal poverty level.
  • Pregnant women in families with income up to 200% of the federal poverty level.
  • Uninsured children (up to age 19) in families with income up to 200% of the federal poverty level.

Help Me Grow (Early Intervention Services – birth to three)

Help Me Grow is a program for Ohio’s expectant parents, newborns, infants and toddlers that provide health and developmental services so children start school healthy and ready to learn. Click on link the link above to find the HMG in your area.

Family Information Network

The Family Information Network of Ohio (FINofOhio) is a statewide organization of parent consultants whose children are or have been in Ohio’s Help Me Grow system. FINofOhio consultants offer support through information and education to families of young children in Help Me Grow and the professionals who serve them.