Spina Bifida Association
The Spina Bifida Association (SBA) serves adults and children who live with the challenges of Spina Bifida. Since 1973, SBA has been the only national voluntary health agency solely dedicated to enhancing the lives of those with Spina Bifida and those whose lives are touched by this challenging birth defect. Its tools are education, advocacy, research, and service.
Kosair Charities
Kosair Charities is a major supporter of SBAK. It is the largest charity in the history of the Kentucky and Southern Indiana region that provides for the medical care of children.
Community Health Charities-Kentucky Chapter
Uniting Donors in the Workplace to Kentucky's Trusted Charities
Spina Bifida Clinics, Hospitals, and Health Departments:
Kosair Children's Hospital
Our services and programs cover nearly every aspect of care and treatment for children - all in a child friendly, family centered atmosphere.
Monroe Carell Jr. Children's Hospital at Vanderbilt
The Spina Bifida Program at the Monroe Carell Jr. Children’s Hospital at Vanderbilt addresses the unique needs of individuals diagnosed with Spina Bifida.
Riley Hospital for Children in Indianapolis
The Spina Bifida Clinic provides comprehensive multidisciplinary care to children and adolescents with spina bifida.
Cincinnati Chidren's Hospital
The Center for Spina Bifida Care at Cincinnati Children's Hospital Medical Center provides comprehensive, family-centered medical care to infants, children and adolescents with repaired myelomeningoceles and other neural tube defects.
Kentucky Health Department Listings (updated January 2010)
Shriners Hospital for Children-Lexington
Shriners Hospitals for Children® has been a leader in pediatric orthopaedic care since 1922.
Spina Bifida Clinic--Commission for Children with Special Health Care Needs
Our mission is to enhance the quality of life for Kentucky's children with special health care needs through direct service, leadership, education and collaboration.
Research:
Management of Myelomeningocele Study (MOMS)
MOMS is a research study designed to compare two approaches to the treatment of babies with spina bifida: surgery before birth (prenatal or fetal surgery) and surgery after birth (postnatal surgery).
Neural Tube Defects Study--Duke University Medical Center
The Duke Center for Human Genetics is currently recruiting families in which one or more family members have any type of neural tube defect, including spina bifida (meningocele or myelomeningocele), anencephaly, encephalocele, lipomyelomeningocele, lipomeningocele, tethered cord, iniencephaly, craniorachischisis, or split cord malformation.
The Spina Bifida Research Resource
The SBRR is a project, funded by the National Institutes of Health, to study the causes of spina bifida and anencephaly.
Support Services:
First Steps
http://fs.chfs.ky.gov
Center for Accessible Living
www.calky.org
(502) 589-6620
981 S. Third St, Louisville, KY 40203
Centers for Disease Control/Birth Defect Prevention
www.cdc.gov
Transit Authority of River City (Cust Service)
(502) 585-1234 TTY (502) 587-8255
Transit Authority of River City
www.ridetarc.org
Superior Van and Mobility
(502) 447-8267
www.superiorvan.com
National Information Center for Children and Youth with Disabilities
www.nichcy.org
Family Information Network on Disabilities (FIND)
www.councilonmr.org
Conquer Chiari
www.conquerchiari.org
Active Day Medical Adult Day Care
http://www.activeday.com/KY.htm
The Spinal Cord Injury Association of Kentucky
www.sciak.org
Derby City Area Spinal Cord Injury Association
www.derbycityspinalcord.org
The National Kidney Foundation of Kentucky
www.nkfk.org
United Healthcare Childrens Foundation
http://www.uhccf.org/apply_applicant.html
AMRAMP
www.amramp.com
Movin' On Mobility
http://www.movinonmobility.com
Kids Center
www.kidscenterky.com
Baby Center
http://www.babycenter.com/
Government Resources:
American Disabilities Act (ADA)
www.usdoj.gov/crt/ada
American Association of People with Disabilities Newsletter
http://visitor.constantcontact.com/email.jsp?m=1101795480929
Commonwealth of Kentucky, Cabinet for Families & Children
http://cfc.state.ky.us
Disability-Connecting the Disability Community to Information & Opportunities
http://www.disability.gov/
Social Security Online-The Red Book
http://www.socialsecurity.gov/redbook/2010/introduction.htm
Educational Resources:
Going to College-Resource for teens with disabilities
http://www.going-to-college.org/
United Healthcare Grant Application
http://www.uhccf.com/index.html
EnTech Enabling Technologies
http://www.spalding.edu/content.aspx?id=2166&cid=242
Career Information:
Independent Industries
http://www.independentindustries.com/
Adaptive Sports and Activites:
Frazier Rehab Adaptive Sports Program
The ultimate vision and goal of the Adapted Sports Program at Frazier Rehab Institute is to improve the quality of life of the individuals with disabilities and offer healthier lifestyle choices for these individuals and their families
OWL
mbazeley@bellsouth.net
Adaptive Sports Center
http://www.adaptivesports.org/
National Ability Center:
www.discovernac.org
Central Kentucky Riding for Hope
www.ckrh.org
The Luci Center
www.thelucicenter.org
BlazeSports
www.blazesports.org
Louisville Fencing
http://www.louisvillefencing.org/index.cfm?fuseaction=wheelchair.main
Locker Soccer Academy
www.lockersoccer.com
Bluegrass Miracle League
www.bluegrassmiracleleague.org
Health Services:
Center for Orthopedic & Prosthetic Care
http://www.centeropcare.com/
(502) 637-7717
Commission for Children with Special Health Care Needs
(502) 595-4459
http://chfs.ky.gov/ccshcn/
Neurosurgery for Kids
www.neurosurgery4kids.com
Institute for Neurology and Neurosurgery
www.nyneurosurgery.org
Council on Mental Retardation--Parent Outreach
www.councilonmr.org/parent.htm
March of Dimes
http://www.marchofdimes.com/
Latex Allergy Links
http://www.latexallergylinks.org/
American Latex Allergy Association/ALERT
www.latexallergyresources.org
Decent Exposures (Latex Free Undergarments)
http://www.decentexposures.com/
Latex List from SBA website-Updated Spring 2009
http://www.spinabifidaassociation.org/atf/cf/{EED435C8-F1A0-4A16-B4D8-A713BBCD9CE4}/LatexList09.pdf
American Academy of Allergy, Asthma & Immunology
www.aaaai.org
UroMed
www.uromed.com
Advocate Medical Services
www.advocatemed.com/
Every Kid Mobility
http://everykidmobility.com/
New Mobility Magazine
https://www.newmobility.com/bookstore-KOW.cfm?type=REG&order_id=new
The Littlest Hero
http://www.littlestheroesproject.org/Littlest_Heroes_Project/Home.html
American Association of People with Disabilities
http://aapd.com/
Family Support Center on Disabilites: Knowledge & Involvement Network (KIN)
http://www.familysupportclearinghouse.org
Family Support Center Brochure
http://www.familysupportclearinghouse.org/Pages/brochure.aspx
ABILITY House
http://www.abilityawareness.org/
Aubrey Rose Foundation
www.aubreyrose.org/
Food and Drug Administration
http://www.fda.gov/
Shunt Recall Notice
http://www.fda.gov/cdrh/recalls/recall-100308.html
ThisAbled
www.thisabled.com
Family Voices
www.familyvoices.org
Health Finder
www.healthfinder.gov
The Boulevard
www.blvd.com
Disability Central
www.disabilitycentral.com
PN (Paraplegia News)
www.pvamagazines.com
Spina Bifida Parents Online Support Forum
www.spinabifidaparents.com
Family Village
www.familyvillage.wisc.edu
Abilities Expo
www.abilitiesexpo.com
Chloe Magazine
www.chloemagazine.com
Emerging Horizons Accessible Travel News
www.emerginghorizons.com
International Federation of Spina Bifida and Hydrocephalus
http://ifglobal.sitehosting.be/home.asp?lang=1&main=1
Exceptional Children Parent Resource Library
http://www.education.ky.gov/KDE/Instructional Resources/Exceptional Children/Parent Involvement/Parent Resource Library.htm