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Living with Spina Bifida

Support Mechanisms for People Living with Spina Bifida

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Donna Jones
The Spina Bifida Association

The mission of the Spina Bifida Association ® (SBA) is to promote the prevention of Spina Bifida and to enhance the lives of all affected.  Since 1973, SBA has been the only national voluntary health agency dedicated to preventing Spina Bifida in future generations and improving the lives of those affected by Spina Bifida through education, advocacy, research, and service.

SBA has a presence in more than 125 communities nationwide and touches thousands of people each year.  Lives are changed by the programs SBA has created, the services the organization provides, and the gains achieved through its advocacy efforts.

Support Mechanisms for People Living with Spina Bifida

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This series: 3,352 views

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Transcripts

Donna Jones: Hello! My name is Donna Jones and I am an adult living with Spina Bifida. When I was growing up on the island of Guam, I was the only person with Spina Bifida. My family and I had no idea, that support mechanisms for people with spina bifida existed. Couping with the challenges of spina bifida, can often times if you are isolating and overwhelming. But there are many support mechanism that existsSpina Bifida clinics can serve as one of these support systems. These clinics often held once in month, bringing together the various medical specialties needed by those with spina bifida.

In 2005, I was lucky enough to do my work capitol hill, to discover the Spina Bifida Association. The Spina Bifida Association and it's network of chapters serve as the strongest support system that exist. Together they are the only National Voluntary health agency dedicated to improving quality of life, for those living with spina bifida.

The Spina Bifida Association and it's Chapters, provide program such as educational conferences, online e-communities and support group services. These programs can help people living with spina bifida connect on a local level, across the nation and even internationally.

Through my involvement in this Spina Bifida Association, I've become more connected with my peers and I'm more aware of medical advances and research done in spina bifida. The dedication and passion of the Spina Bifida Association, have inspired me to become both the leader and an advocate for this Spina Bifida Community Finding the Spina Bifida Association, has opened my eyes to a whole new world of medical information, friendship and support and basic advice on living with spina bifida, some of which I would like to share with you in my next segment.

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