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Spina Bifida
FAQ About Spina Bifida
Living With Spina Bifida
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Pregnancy in SB
July 2009: Are people with Spina Bifida Occulta at an increased risk of osteoporosis?
Folate for Woman Related to Child with SB
Delivery of baby for women with SB
Adult tethered cord release and recurrance
May 2009: Is there a genetic blood test yet that predicts a neural tube defect?
Is there a genetic blood test yet that predicts a neural tube defect?
Can a person with Spina Bifida father a child?
When do I let my child with Spina Bifida catheterize?
I want to develop a sexual relationship with my partner but I am afraid of losing control of my bowel and bladder
I am an adult with Spina Bifida that would like to have eye surgery
I am 18 years old and need to find a doctor
I have a question regarding sex and Spina Bifida
I am a college student with Spina Bifida. My home is Indiana , but I go to school in New York.
I am a parent of a child with Spina Bifida.
Can I go scuba diving with a ventricular shunt
I find it hard as a wheelchair user
SB and shunts have heightened hearing sensitivity
August 2009: I now have a colostomy and am in my chair full time. What should I do?
September 2009: My husband and I are using donor sperm for artificial insemination
I have a question regarding sex and Spina Bifida. My girlfriend has Spina Bifida
I have a 3 ½-month old granddaughter who had a dimple at the base of her spine
October 2009: I am a 21-year old-woman with Spina Bifida and just got married.
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B Healthy Recipes - Spring 2009
B Healthy Recipes - Spring 2010
B Healthy Recipes - Summer 2008
B Healthy Recipes - Fall 2008
B Healthy Recipes - Winter 2009
B Healthy Recipes - Fall 2009
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SBA eNewsletters
October 2008: SBA Leaders Visit Capitol Hill
July 2008: Let’s Get Physical
July 2008: Medicare Changes Reimbursement Policy on Intermittent Catheterization
July 2008: The Spina Bifida Community’s Goodwill Ambassadors
July 2008: Tatiana Goes for the Gold
July 2008: John Page Plans Expedition for Spina Bifida Awareness
July 2008: SBA Wraps Up the 35th National Conference
October 2008: Paralympics and Olympics Wrap-up
October 2008: Reaching for PossibilitiesTeaching Optimism, Emotional Resilience and Hope in Recovery and Rehabilitation
October 2008: October Is Spina Bifida Awareness Month
October 2008: Expanding Civil Rights for the Disabled
July 2009: SBA Prevention Program – Get Involved
July 2009: Are Individuals with Special Needs Ready for Emergencies?
July 2009: A Boy Scouts of America Journey for a Mother and Son
July 2009: 36th National Conference Concludes
July 2009: What You Need to Know about Latex Allergies
April 2008 eInsights: “B” Healthy Recipes for You and Your Health
April 2008 eInsights: National Spina Bifida Program
April 2008 eInsights: National Survey of the Spina Bifida Community
April 2008 eInsights: Online Communities Provide Valuable Connections
April 2008 eInsights: Talking Teens and Young Adults Blazing a New Path
October 2009: CDC Issues Updated Vaccination Recommendations for Swine Flu
October 2009: Latex Free Toys
October 2009: Night of 100 Parties
October 2009: National Spina Bifida Patient Registry
October 2009: Walk-N-Roll for Spina Bifida
January 2010: NCFA and SBA Take to the Airwaves-and Net-to Celebrate Folic Acid Awareness Week
January 2010: Eliminating Barriers to Accessibility Is a Team Effort
January 2010: A Win for Spina Bifida, Patients, Families and Advocates
January 2010: Haiti's Devastating Earthquake
January 2010: Important Information about Seasonal Flu from the CDC
May 2010: Pre-conference Programming to Highlight Employment for Adults with Spina Bifida
May 2010: NCBDDD Reaching Out to Women of Childbearing Age with NTD Prevention Information
May 2010: ADA Celebrates 20 Years
May 2010: Walk-N-Roll for Spina Bifida
August 2010: SBA’s 37th National Conference Concludes
August 2010: Massachusetts Mom Advocates for $2M to Upgrade Neighborhood Train Station
August 2010: Update on the National Spina Bifida Patient Registry
August 2010: Disability Etiquette Twenty Years Later
August 2010: Walk-N-Roll Update
October 2010: National Spina Bifida Awareness Month Concludes
October 2010: Executive Skills and Your Child with Learning Disabilities
October 2010: SBA Launches Preparations Web site
October 2010: Nonelderly Medicare Beneficiaries: Access and Costs More Problematic
October 2010: Latex Free Toys
January 2011: SBA Celebrates Birth Defects Prevention Month and Folic Acid Awareness Week by Increasing Education Efforts
January 2011: Working to Make Health Provider Settings More Accessible
January 2011: Take Time in 2011 to Educate the New Congress about Spina Bifida
January 2011: U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES LAUNCHES HEALTHY PEOPLE 2020
January 2011: Walk-N-Roll for Spina Bifida
April 2011: Disneyland Hosts SBA’s 38th National Conference
April 2011: Spina Bifida Association Co-Hosts Congressional Briefing
April 2011: Ticket to Work Program Helps the Disabled Community Find Work
April 2011: Health Care Blogger Chronicles Life with Spina Bifida
April 2011: Choosing a Summer Camp for Your Child
July 2011: SBA Concludes 38th National Conference
July 2011: Tips and Tools for Working with Your Child’s Educators
July 2011: SBA Launches Grassroots Program at National Conference
July 2011: Walk-N-Roll® for Spina Bifida Gains Momentum
July 2011: Study Finds That Children with Medicaid Insurance Have Longer Wait Times
October 2011: National Spina Bifida Awareness Month
October 2011: SBA Partners with Grain Foods Foundation
October 2011: Latex Free Toys
October 2011: Update on SB University
January 2012: National Birth Defect Month
January 2012: Secondary Conditions of SB
January 2012: Assistive Technology
January 2012: Inspiration for 2012
January 2012: Health Care Outlook for 2012
News
October 3, 2007 Folic Acid Mandate Foils Birth Defects
Finding reasons to be thankful
May 7, 2009 - SBA Professional Advisory Council Issues Statement about Swine Flu and Spina Bifida
August 18, 2009: CDC Issues Updated Vaccination Recommendations
September 14, 2009: Mary Jo Dunleavy, Long-time Spina Bifida Champion, Passes Away
August 19, 2009: SBA Mourns Loss of Two Media Giants and Spina Bifida Supporters
SBA and SBF Announce 2010 Research Funding
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The SBA National Office can be reached at 800-621-3141.
Name (Ext.)
Title
Email
Robin Austin (ext. 29)
Communications Specialist
raustin@sbaa.org
Mark Bohay (ext. 22)
Web Initiatives & Development Manager
mbohay@sbaa.org
Glenrae Brown (ext. 19)
Staff Accountant
gbrown@sbaa.org
Cindy Brownstein (ext. 14)
President & CEO
cbrownstein@sbaa.org
Amanda Darnley
(ext. 15)
Director of Communications & Marketing
adarnley@sbaa.org
Tara Edwards (ext. 23)
Individual Giving Manager
tedwards@sbaa.org
Mike Emery (ext. 21)
Development & Database Manager
memery@sbaa.org
Melanie Gaylord (ext. 17)
Administrative Coordinator/Office Manager
mgaylord@sbaa.org
Carmen J. Head (ext. 13)
Director, Education & Support Services
cjhead@sbaa.org
Joseph Martin (ext. 24)
Controller
jmartin@sbaa.org
Mary Nethercutt (ext. 20)
National Walk Director
mnethercutt@sbaa.org
Michelle Peacock (ext. 30)
Special Events Manager
mpeacock@sbaa.org
Lisa Raman (ext. 35)
Director, National Resource Center
lraman@sbaa.org
Christi Rauth (ext. 31)
National Walk Manager
crauth@sbaa.org
Sara Struwe (ext. 12)
Chief Operating Officer &
Director of Chapter Development
sstruwe@sbaa.org
Christopher Vance
(ext. 11)
Director of Development
cvance@sbaa.org
