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SPINA BIFIDA ASSOCIATION OF [NAME OF LOCAL SBA] What is Spina Bifida?

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Presentation on theme: "SPINA BIFIDA ASSOCIATION OF [NAME OF LOCAL SBA] What is Spina Bifida?"— Presentation transcript:

1 SPINA BIFIDA ASSOCIATION OF [NAME OF LOCAL SBA] What is Spina Bifida?

2 The most common, permanent and disabling birth defect in the United States SPINA BIFIDA ASSOCIATION OF [NAME OF LOCAL SBA]

3 Who is at risk? Eight babies are born with Spina Bifida every day 60 million women are at risk of having a baby born with Spina Bifida SPINA BIFIDA ASSOCIATION OF [NAME OF LOCAL SBA]

4 What are the effects of Spina Bifida? Ongoing medical challenges –Full or partial paralysis –Nervous system complications –Bladder and bowel control difficulties –Learning disabilities –Depression –Social and sexual issues –Latex allergy SPINA BIFIDA ASSOCIATION OF [NAME OF LOCAL SBA]

5 What does this mean for [name of the organization]? SPINA BIFIDA ASSOCIATION OF [NAME OF LOCAL SBA] 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

6 How does Spina Bifida happen? 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 SPINA BIFIDA ASSOCIATION OF [NAME OF LOCAL SBA]

7 What happens after birth? Surgery –Reduces risk of infection –Further damage to the spinal cord Life-long treatment and care SPINA BIFIDA ASSOCIATION OF [NAME OF LOCAL SBA]

8 Can Spina Bifida be prevented? 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) SPINA BIFIDA ASSOCIATION OF [NAME OF LOCAL SBA]

9 What is folic acid? 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. SPINA BIFIDA ASSOCIATION OF [NAME OF LOCAL SBA]

10 Our Mission Promote prevention of Spina Bifida Enhance the lives of all affected SPINA BIFIDA ASSOCIATION OF [NAME OF LOCAL SBA]

11 What We Do [Number of individuals and families served] Serve as a liaison with local or nearby medical experts Engage in community activities SPINA BIFIDA ASSOCIATION OF [NAME OF LOCAL SBA]

12 Our Friends in the Community [List your current community partners] SPINA BIFIDA ASSOCIATION OF [NAME OF LOCAL SBA]

13 What can [name of local SBA] offer [name of the organization]? [Provide informational materials about folic acid and Spina Bifida in English and Spanish] [Family members and staff to volunteer at your events] [List your organization name and logo in our Web site and newsletter ] SPINA BIFIDA ASSOCIATION OF [NAME OF LOCAL SBA]

14 What can [name of local SBA] offer [name of the organization]? [Present information about folic acid to your members or staff] [Present before the organization’s support groups/regular meetings] [Present a personal story about Spina Bifida and the importance of taking folic acid every day] SPINA BIFIDA ASSOCIATION OF [NAME OF LOCAL SBA]

15 What can [name of local SBA] offer [name of the organization]? [Present a personal story about Spina Bifida and talk about the importance of taking folic acid every day] SPINA BIFIDA ASSOCIATION OF [NAME OF LOCAL SBA]

16 What can [name of the organization] do for [name of local SBA]? [Volunteer/sponsor/co-sponsor/in-kind] at upcoming [name of event] [Invite your chapter to present information about folic acid to their members or staff] [Present information about your organization to our chapter] SPINA BIFIDA ASSOCIATION OF [NAME OF LOCAL SBA]

17 What can [name of the organization] do for [name of local SBA]? [Help us distribute materials by sharing them with your members] [Help local SBA identify reliable translation options] SPINA BIFIDA ASSOCIATION OF [NAME OF LOCAL SBA]

18 Additional Resources [Local contact information, including name, address, e-mail address, and phone/fax number] Spina Bifida Association –National Resource Center: 1-800-621-3141 –www.spinabifidaassociation.org SPINA BIFIDA ASSOCIATION OF [NAME OF LOCAL SBA]

19 Questions? SPINA BIFIDA ASSOCIATION OF [NAME OF LOCAL SBA]


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