Title: SBADV - Contact Us Descriptive info: Spina Bifida Association of Delaware Valley.. P.. O.. Box 1235.. Havertown, PA 19083.. Phone: 610-584-5530.. Toll Free: 800-223-0222.. Email:.. info@sbadv.. org.. To comment, suggest or correct any information on this website, please contact.. webmaster@sbadv..
Title: SBADV - About Spina Bifida Descriptive info: About Spina Bifida.. What is Spina Bifida?.. Spina Bifida is the most common permanently disabling birth defect in the United States.. An average of 8 babies every day are born with Spina Bifida or a similar birth defect of the brain and spine.. There are over 60 million women in the U.. S.. who could become pregnant and each one is at risk of having a baby born with Spina Bifida.. Spina Bifida occurs when the spine of the baby fails to close.. This creates an opening, or lesion, on the spinal column.. Spina Bifida happens during the first month of pregnancy when the spinal column and brain, or neural tube, is formed.. This is before most women even know they are pregnant.. Because of the opening on the spinal column, the nerves in the spinal column may be damaged and not work properly.. This results in some degree of paralysis.. The higher the lesion is on the spinal column, the greater the likelihood of increased paralysis.. Surgery to close the spine is generally done within hours after birth.. Surgery helps to reduce the risk of infection and to protect the spinal cord from greater damage.. Frequently Asked Questions About Spina Bifida (.. FAQ.. ).. The SBA National Resource Center has gathered the most frequently asked questions about Spina Bifida to allow easy access to important information.. If the answer to your question is not.. here.. , please see the.. SBA FAQ.. or the.. National Resource Center.. FAQ Index.. What Causes Spina Bifida?.. Are There Different Types of Spina Bifida?.. Occult Spinal Dysraphism (OSD).. Spina Bifida Occulta.. Meningocele.. Myelomeningocele (Meningomyelocele).. How Is Spina Bifida Treated?.. Can Anything Be Done To Prevent Spina Bifida?.. What Is Folic Acid?.. What Conditions Are Associated With Spina Bifida?.. What Physical Limitations Exist?.. Can Spina Bifida Be Detected Before Birth?.. What Is the Long-Term Outlook for Children With Spina Bifida?.. What Causes Spina Bifida?.. The cause of Spina Bifida is not known with certainty.. However, scientists believe that genetic and environmental factors act together to cause the condition.. (Goto index).. Are There Different Types of Spina Bifida?.. Yes -.. OSD.. ,.. Occulta.. Myelomeningocele.. Occult Spinal Dysraphism (OSD).. In OSD infants have visible anomalies on the lower back.. underlying problems of the spinal cord.. The most common anomaly is a dimple.. Although most dimples in babies are not associated with OSD, a dimple may be the opening of a sinus tract and may be associated with it.. Other birthmarks commonly associated with OSD include red raised marks (hemangioma), flat reddish marks (flame nevus), tufts of hair, or small lumps (masses).. A dermal sinus may serve as a tract for bacteria into the spinal canal that can lead to meningitis.. In OSD the spinal cord itself may be tethered to surrounding tissue, or may be split, all of which can lead to subsequent neurological damage as the child grows.. Or the spinal cord may have a benign fatty tumor (lipoma) bound to it, which also can lead to neurological damage.. Infants who have these stigmata on their backs should have a thorough neurological evaluation as well as imaging of the underlying soft tissue and spinal cord using MRI scan (or ultrasonography if the radiologist is experienced).. Spina Bifida Occulta.. Spina Bifida occulta occurs in approximately 15% of healthy people and is often called hidden Spina Bifida.. In this harmless condition, which does not cause symptoms, the spinal cord and nerves are normal and there is no opening on the back.. People are not aware that they have this unless a radiogram (x-ray) of the back is taken.. Meningocele.. In this condition, the protective coating of the spinal cord (meninges) comes through the open part of the ... occurrence of Spina Bifida could be reduced by up to 70 percent.. Because half of the pregnancies in the United States are unplanned, the SBA encourages women to take a multivitamin containing 400 mcg of folic acid each day throughout their reproductive years.. In addition, women at increased risk for Spina Bifida (women who have a child or sibling with Spina Bifida, have had an affected pregnancy, or have Spina Bifida themselves) should take 4,000 mcg, also written as 4.. 0 mg, of folic acid.. by prescription.. for one to three months.. before becoming pregnant,.. and through the first three months of the pregnancy.. What Is Folic Acid?.. Folic acid, a common water-soluble B vitamin, is essential for the functioning of the human body.. During periods of rapid growth, such as pregnancy and fetal development, the body's requirement for this vitamin increases.. It is found naturally in green leafy vegetables; the synthetic form is actually better absorbed in the body.. What Conditions Are Associated With Spina Bifida?.. Special attention is needed to identify and treat conditions associated with Spina Bifida.. Due to the wide range of neurological damage and mobility impairments, it can be difficult to identify some secondary conditions.. Attention should be focused on the psychological and social development of children and young adults with Spina Bifida.. Conditions associated with Spina Bifida include mobility impairments, bowel and bladder complications, latex allergy, obesity, skin breakdown, gastrointestinal disorders, learning disabilities, depression, tendonitis, and social and sexual issues.. What Physical Limitations Exist?.. Persons with Spina Bifida need to learn mobility skills and, with the use of crutches, braces, or wheelchairs, can achieve more independence.. Also, with new techniques, children can become independent in managing their bowel and bladder problems.. Physical disabilities like Spina Bifida can have profound effects on a child's emotional and social development.. It is important that health care professionals, teachers and parents understand the child's physical capabilities and limitations.. To promote personal growth, they should encourage children (within the limits of safety and health) to be independent, to participate in activities with their non-disabled peers and to assume responsibility for their own care.. Can Spina Bifida Be Detected Before Birth?.. There three prenatal tests can be done to detect Spina Bifida.. First, most women in the United States have blood drawn during the 16th to 18th weeks of pregnancy to check for blood levels of a protein called alpha-fetoprotein (AFP screening test), which is elevated in about 75 80% of women having fetuses with Spina Bifida.. Second, ultrasound (sonograms) of the fetus can detect signs of Spina Bifida such as the open spine.. Finally, maternal amniocentesis, in which a small sample of the amniotic fluid is withdrawn through a thin needle, can detect alpha-fetoprotein and another protein.. Unfortunately, there are limitations on any test, and these tests do not identify every single child with Spina Bifida.. What Is the Long-Term Outlook for Children With Spina Bifida?.. Fortunately, with the proper health care, children with Spina Bifida can lead active and productive lives.. Most are successful in school and many are actively involved in modified sports activities despite their physical challenges.. Due to medical and surgical interventions over the last 40 years, approximately 90 percent of babies born with Spina Bifida now survive into adulthood, approximately 80 percent have normal IQ scores, and approximately 75 percent are in competitive sports and recreational activities.. Fact Sheet Contributors:.. Gregory S.. Liptak, MD, MPH.. Upstate Medical University, Syracuse, NY; SBA Professional Advisory Council.. This information does not constitute medical advice for any individual.. As specific cases may vary from the general information presented here, SBA advises readers to consult a qualified medical or other professional on an individual basis.. Revised April 2007..
Title: SBADV - About Us Descriptive info: About Us.. Mission Statement:.. Goals:.. To foster and promote the human rights and well being of all people having the condition known as spina bifida and hydrocephalus.. To promote research into the cause, improved treatment and prevention of spina bifida and associated defects.. To promote, encourage, and stimulate the care, treatment, education, socialization, vocational development, and normalization of persons with these conditions.. To promote the training of competent personnel to aid in the treatment, care, education, adjustment, and rehabilitation of persons with these conditions.. To promote public awareness and action by initiating efforts to inform the public about spina bifida ... and to hold the same and expend, contribute, disburse, and otherwise handle and dispose of the same for the promotion of the foregoing purposes.. This organization is dedicated to exclusively educational and non-profit purposes of the above mentioned activities and no substantial part of the activities may be to influence legislation by propaganda or otherwise.. Supporting the following counties surrounding Philadelphia since 1972.. In Pennsylvania.. In New Jersey.. Bucks.. Gloucester.. Chester.. Camden.. Delaware.. Burlington.. Mongtomery.. Philadelphia.. We are a 501(c)(3) Non-Profit Organization.. Contact us.. Spina Bifida 5k Walk Run or Roll -.. Saturday, October 20, Lloyd Hall (Kelly Drive), Philadelphia, PA..
Title: SBADV - Programs and Services Descriptive info: Programs and Services.. SBADV provides the following programs and services to individuals living with Spina Bifida throughout the following counties in Pennsylvania and New Jersey: Philadelphia, Bucks, Montgomery, Chester, Delaware, Gloucester, Camden, and Burlington.. Events and Meetings with Speakers.. Spina Bifida and Folic Acid Awareness and Outreach.. New Parent Support and Referral.. Adult Network.. Subscription to our quarterly newsletter.. SBADV Website: sbadv.. Summer Camp Assistance.. Financial Assistance to attend the SBA Conference.. Post Secondary Education Assistance.. Equipment Assistance.. Medical supplies related to Spina Bifida.. To receive the SBADV Newsletter and keep up-to-date on the most current information throughout our area,.. register.. as a constituent of SBADV.. To apply for financial aid from any of our funds, please complete the Application for Financial Aid.. Applications for the following programs ... bills related to Spina Bifida.. Equipment Fund.. - provides up to $1,500 per fiscal year to purchase wheelchairs, crutches, and other adaptive devices.. Please contact.. for a list of approved items.. Incontinence Fund.. - provides up to $1000 per fiscal year for incontinent supplies.. Driver s Education Fund.. - provides a maximum of $500 for behind-the-wheel driver s education training.. Post Secondary Education.. - offers assistance of up to $1000 to individuals pursuing college, trade school, or other specialized training.. National Events Fund.. - offers assistance of up to $500 to individuals who qualify for participation in a National level event.. IMPORTANT!! There are no financial eligibility requirements for these programs.. These amounts are based on a per individual basis.. However, the association prefers that you.. with SBADV..
Title: SBADV - How to Help Descriptive info: How to Help.. There are many ways you can help to continue our.. mission.. :.. Make a Donation!.. Volunteer!.. Join the Board of Directors! (.. download PDF.. Sponsor.. an event!.. Attend one of our.. events.. !.. Register as a constituent!..
Title: SBADV - Links and Resources Descriptive info: Links and Resources.. NOTE: These links are provided as a courtesy to our visitors.. SBADV is not responsible for the content found on any external websites.. Please.. contact us.. to request any additions or corrections to the following links.. Featured Partners.. National Spina Bifida Association.. Carousel House - Philadelphia Department of Recreation.. Katie's Komets Sports Teams.. Variety Club - Philadelphia.. Keystone State Corvette Club.. Assistance for Individuals, ... Children with Disabilities.. Technical Assistance Alliance for Parent Centers.. Office of Special Education and Rehabilitative Services.. DisabilityInfo.. gov.. National Parent Network on Disabilities.. iVillage - Parenting.. Job and Career Assistance.. Ability Jobs.. Able to Work Network.. Accessibility Information.. VCI Mobility.. -.. Locations.. PA Assistive Technology Lending Library.. Programs of The Pennsylvania Center for Adapted Sports.. Latex Allergy Information.. Latex Allergy Help.. Latex Allergy Links.. Latex Allergy and Foods..
Title: SBADV - Annual Meeting Descriptive info: 2012 Holiday Party Annual Meeting.. On Saturday, December 8, 2012, from 2 to 5pm, at the.. Carousel House.. , at 4300 Avenue of the Republic, in Philadelphia, the SBADV will host our Holiday Party and Annual Meeting.. This year's event is sponsored by Coloplast and will feature a discussion on new urological products, advances, and possible ways to reduce health insurance co-pays.. Michele Leahy.. to RSVP to this event.. Please return your registration form.. today.. Holiday Party Annual Meeting.. - Saturday, December 8, Carousel House, Philadelphia, PA..
Title: SBADV - 5K Race Descriptive info: Spina Bifida 5K Race.. Sponsored by the Philadelphia Department of Recreation.. Location: 1 Boathouse Row, Kelly Drive in Philadelphia, PA.. Date: October 20, 2012.. Start Time: 9:00am.. Thanks to all participants and supporters who helped make this a special day.. We are grateful for your continued support can't wait to see you at the next event!.. Pictures from.. this.. years.. 5k.. 2011 Registration letters.. Annual Meeting Holiday Party -.. December 11, 2012..
Title: SBADV - Registration Descriptive info: 2012 Registration.. March 2012.. Dear Friends,.. The mission of the Spina Bifida Association of Delaware Valley (SBADV) is to promote awareness and prevention of Spina Bifida and to enhance the lives of all affected.. To be effective, we need a strong voice, and in numbers there is strength.. Please complete and return the 2012 Registration Form attached to this letter to help us achieve our mission.. Your registration will ensure that you will receive information on upcoming events and Association information.. The SBADV depends on fundraising and donations to support the numerous programs that are offered.. By returning your registration form you help to continue to provide programs and services to individuals living with Spina Bifida throughout the following counties: Philadelphia, Bucks, Montgomery, Chester, Delaware, Gloucester, Camden and Burlington.. SBADV provides:.. Spina Bifida and Folic Acid ... receive e-mail updates, newsletters and mailings.. Additionally, anyone who wishes to receive the Spina Bifida Association s national newsletter,.. Insights.. , can sign up for this newsletter through the SBADV registration form and receive a discounted price of $20.. If you would like to make an additional donation, we have provided an option of the registration form so you can help provide programs and services to individuals with Spina Bifida.. and fee at your earliest convenience to.. SBADV, P.. Box 1235, Havertown, PA 19083.. Please note our new address.. All forms are due by April 30, 2012 to ensure inclusion in the 2012 Directory.. Thank you for your support!.. Sincerely,.. Stuart Greenberg.. President, Board of Directors.. NOTE: If you are a current or former member and you have not received your registration form in the mail, please..