Resources for Families
Our list of links includes organizations, research projects, informational resources and blogs that are associated with neural tube defects. While most are focused on spina bifida, there are also pages that have information or suggestions for support for children with hydrocephalus, and for the various treatment options that pregnant women have today. In utero treatment of spina bifida has shown great promise; you can read about the results of these studies and surgical innovations here. There are also several excellent sources for networking with other families who are dealing with spina bifida and who understand the value of support from people facing the same challenges.
Spina Bifida Association is a national organization that offers a large amount of educational material on this most common of all NTDs and the environmental causes possibly associated with its development. In addition there is excellent material on the educational needs of a child with spina bifida; living with spina bifida; and a national directory of clinics for spina bifida treatment.
ASFHelp.com is a support group for parents who have a child that has been diagnosed with anencephaly. Resources include discussions of the ethical issues involved, grief counseling, and how to find local support.
Hydrocephalus Foundation is a nonprofit organization that provides support, educational resources and networking opportunities for families affected by hydrocephalus.
HUGS of Florida is an organization based in Tampa that was formed by families who have a member with hydrocephalus, in order to provide support for one another and for others in the region who would like to participate.
Hydrocephalus Association is a national group that provides educational and networking resources for people affected by this condition through a family member or loved one. They are actively engaged in regional organizing and fundraising.
Spina Bifida Family Support is an Indiana-based organization that provides ongoing support to families raising a child with spina bifida along with educational material and a listing of resources across the state.
Association for Spina Bifida and Hydrocephalus is Europe’s largest organization engaged in providing support to families who are managing one of these conditions for a family member. It is a UK based nonprofit.
National Hydrocephalus Foundation is an Illinois based nonprofit incorporated in 1979 that provides informational services and networking opportunities for members and for families with a child who has hydrocephalus.
MOMS is the Management of Myelomeningocele Study, a long term clinical research project that began in 2003, enrolling participants who are carrying babies with spina bifida.
Hussman Institute for Human Genomics at the University of Miami is a large multifaceted medical research facility that is currently engaged in a study on NTDs. The study is focusing on environmental and genetic causes of the various NTDs and is currently recruiting participants.
Duke Center for Human Genetics is conducting a long-term study on genetics and neural tube defects. The project has been recruiting families since 1993 and continues to do so, having broken their study into subgroups that focus on specific types of NTDs.
Society for Research into Hydrocephalus and Spina Bifida was founded in Great Britain in 1957 and currently includes 30 international members that underwrite research projects on these specific NTDs.
Spina Bifida Association of Northwest Ohio is actively involved in recruiting participants for two spina bifida studies; one being conducted by the Kenney Krieger Institute and one by the University of Michigan.
Prenatal versus Postnatal Repair of Myelomeningocele is an article in the New England Journal of Medicine reporting on a study of both prenatal and postnatal repair of this spina bifida condition. The researchers concluded the prenatal intervention brings better results.
Clinical Trials Feeds is a listing of active clinical trials in the country for various diseases and conditions. The site currently lists thirty three trials underway for spina bifida.
Society for Women’s Health Research is a site that combines advocacy with a listing of clinical trials around the country for a number of medical issues including spina bifida. There are also leads on the site to other resources for clinical trials.
Spina Bifida Moms is a blog maintained by a 30-something woman with spina bifida who is married and raising a healthy daughter. The focus of this blog is what the impact of the parent’s NTD may have on the child that he or she is raising.
Spina Bifida Kids is maintained by several parents of children with spina bifida. The blog contains perspective and experiences that befall a spina bifida parent, and also offers resources and family oriented groups that parents can access.
Children & Adults with Spina Bifida & Hydrocephalus is a blog that originates at the University of Wisconsin Waismen Center, a research center on genetics and stem cell research. The blog has been in existence since 1996 and focuses primarily on myelomeningocele, the most severe form of spina bifida.
Walking with Spina Bifida is a blog from a young man who grew up with spina bifida and struggled to learn to walk as well as undergoing several surgical reconstructions. Today he is college educated and employed.
Ruth’s Story is a blog about a fifth child born to parents who were then faced with raising an infant with spina bifida. Good stories about learning how to manage the toddler and some great photos.
Research Ethics Blog looks at the issues surrounding prenatal treatment of spina bifida, a recent innovation that has offered hope to many parents who are expecting a child that has been diagnosed with the condition.
National Institute of Neurological Disorders and Stroke offers a fact sheet on spina bifida that provides basic information for those seeking accurate explanations of the disease. The Institute is one of the National Institutes of Health.
Hydrocephalus Conditions and Treatment is an information source assembled by Children’s Hospital of Boston that has both video and printed material on the nature of the condition and the treatment modalities used at the Hospital.
National List of Clinics that provide treatment for spina bifida was developed and is currently maintained by the Spina Bifida Association. The list includes links to medical facilities in all fifty states.
Spina Bifida University is a service of the Spina Bifida Association that provides online seminars and other presentations on matters relevant to the spina bifida community, including medical information, vocational opportunities, and presentations from healthcare providers.
Fetal Hydrocephalus is an informational site for families and friends of someone with this condition. The site contains information on medical terms and on in-home care for individuals of varying ages.
Spina Bifida Surgery is one of the topics covered in the Children’s Hospital of Philadelphia Center for Fetal Diagnosis and Treatment. This innovative approach to spina bifida treatment involves fetal surgery prior to birth.
Living with Spina Bifida is a general information page from the Centers for Disease Control that addresses, among other things, the role of advocacy that parents of children with this condition must take on.
Children’s National Medical Center in Washington DC provides hands-on educational opportunities for parents with a spina bifida child. The Center brings together experts in various medical fields to advise on managing the physical handicaps associated with spina bifida.
Prescription Drugs Known to Cause Neural Tube Defects
Actos Lawsuit – Actos (pioglitazone) is a Type 2 diabetes drug which has been linked to an increased risk of heart attack, heart failure, and death.
National and Professional Organizations:
American Academy of Pediatrics
American College of Obstetrics/Gynecology
American Medical Women’s Association
Pregnant with Cancer Support Network
Agency for Health Care Policy & Research
Center for the Evaluation of Risks to Human Reproduction
Centers for Disease Control & Prevention
FDA Office of Women’s Health
Maternal & Child Health Bureau
National Institute for Child Health and Human Devlopment
National Institutes of Health
Occupational Safety & Health Administration