SPINA BIFIDA ASSOCIATION

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SPINA BIFIDA ASSOCIATION
What is Spina Bifida?

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What is Spina Bifida?
SPINA BIFIDA ASSOCIATION

• The most common, permanent and disabling birth
  defect in the United States

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Who is at risk?
SPINA BIFIDA ASSOCIATION

• Eight babies are born with Spina Bifida every day
  
• 60 million women are at risk of having a baby
  born with Spina Bifida

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What are the effects of Spina Bifida?
SPINA BIFIDA ASSOCIATION

• Ongoing medical challenges
• Full or partial paralysis
• Nervous system complications
• Bladder and bowel control difficulties
• Learning disabilities
• Depression
• Social and sexual issues
• Latex allergy

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Additional Issues for Individuals with Spina
Bifida
SPINA BIFIDA ASSOCIATION

• Latex allergy
• 70 of children and adolescents with Spina Bifida
  are sensitive to latex
• Items made with latex include
• Promotional items like stress balls
• Balloons
• Rubber bands
• Rubber erasers

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How does Spina Bifida happen?
SPINA BIFIDA ASSOCIATION

• First month of pregnancy
• Before most women know they are pregnant
• The spine does not close
• Causes an opening or lesion
• Damaged nerves may result in varying degrees of
  paralysis

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What happens after birth?
SPINA BIFIDA ASSOCIATION

• Surgery
• Reduces risk of infection
• Further damage to the spinal cord
• Life-long treatment and care

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Can Spina Bifida be prevented?
SPINA BIFIDA ASSOCIATION

• Exact cause is not known
• Medical research confirms link between folic acid
  and Spina Bifida
• Women who take 400 mcg of folic acid every day
  reduce the risk by up to 70.
• BEFORE becoming pregnant
• During first three months of pregnancy
• (and other birth defects)

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What is folic acid?
SPINA BIFIDA ASSOCIATION

• B-vitamin that builds healthy cells
• In most multivitamins
• Foods
• Leafy green vegetables (broccoli and spinach)
• Fruits and juices (orange juice)
• Folic acid-fortified breakfast cereals and other
  bread and grain products
• The surest way to get enough folic acid every day
  is to take a vitamin with folic acid. 

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Our Mission
SPINA BIFIDA ASSOCIATION

• Dedication to fostering communities in which all
  individuals are prepared and empowered to fully
  participate in society, have access to education,
  health care and employment options in their
  chosen community

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What We Do
SPINA BIFIDA ASSOCIATION

• Work in partnership with local organizations and
  agencies
• Serve as a liaison with local or nearby medical
  experts
• Engage in community activities

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Our Friends in the Community
SPINA BIFIDA ASSOCIATION

• Regional Center for Independent Living
• St. Marks St. Johns Church
• Kirch Center at Golisano Childrens Hospital at
  Strong Memorial
• YOU

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What can SBRC offer?
SPINA BIFIDA ASSOCIATION

• Provide informational materials about folic acid
  and Spina Bifida in English, Spanish and Braille
• Provide education and awareness to your employees
• Provide referral information to local agencies
  and support programs

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What can SBRC offer ?
SPINA BIFIDA ASSOCIATION OF GREATER ROCHESTER

• Present information about folic acid to your
  members or staff
• Present before the organizations support
  groups/regular meetings
• Present a personal story about Spina Bifida and
  talk about the importance of taking folic acid
  every day

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A Personal Story
SPINA BIFIDA ASSOCIATION OF GREATER ROCHESTER
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What can your organization or agency do for SBRC?
SPINA BIFIDA ASSOCIATION OF GREATER ROCHESTER

• Volunteer / Sponsor upcoming events
• Invite us to present educational and awareness
  information to your staff and customers
• Assist us in educating the community

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What can your organization or agency do for SBRC?
SPINA BIFIDA ASSOCIATION OF GREATER ROCHESTER

• Help us distribute our materials by sharing them
  with your staff and customers
• Help SBRC identify reliable transition options
  for our members

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Additional Resources
SPINA BIFIDA ASSOCIATION OF GREATER ROCHESTER

• Regional Center for Independent Living
• Spina Bifida Resource Center
  
• [phone] (V/TTY)
• www.rcil.org/SBRC
• Spina Bifida Association of America
• 1-800-621-3141

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Questions?
SPINA BIFIDA ASSOCIATION OF GREATER ROCHESTER