Author: Nia Karmann, President, Nebraska Spina Bifida

To celebrate Spina Bifida Awareness Month this October, we reached out to Nia Karmann, President of Nebraska Spina Bifida, to learn more about how she and her colleagues support the disability community through programming, financial support and spreading awareness about spina bifida. Read on to learn more about their organization.

What is Nebraska Spina Bifida’s mission statement?

Our mission is to foster and promote the rights and well-being of all people with spina bifida and to promote, encourage and stimulate care, treatment, education, socialization and social development of persons with spina bifida.

What are some examples of the ways your organization supports the disability community in Nebraska?

To support the disability community, we provide educational materials to new parents through local clinics and hospitals; offer updated educational materials as the child progresses through infancy, childhood, school age and teen years; connect individuals to a Young Adult Network that addresses issues of independence, health care, employment, socialization and aging with spina bifida; help families apply for financial grants to attend regional and national conferences that address living with spina bifida; offer financial support through the Amen fund, camperships and IDEA fund, and more. 

What is the most rewarding part of your job?

The most rewarding part of our job is providing opportunities to link families and connect children, teens and adults so they can develop relationships and support each other.

Do you have any uplifting stories of interactions, or special times at events, that you can share?

Nebraska Spina Bifida has been hosting a statewide holiday party for over 30 years and the same Santa has welcomed our kids every year. For at least one day a year, our kids are not “the only kid in a wheelchair” in the room. They are among dozens of friends who are just like them. They have watched each other grow up and Santa knows them by name. Social media and texting have helped us bridge the distance and keep our kids connected, but it is so heartwarming to watch the kids reconnect in person every holiday season.  

How can others get involved in your initiatives?

The best ways to get involved are to check out our website and Facebook (@NebSpinaBifida) for information and events, ask to be part of our email list and volunteer to help with large family socials and events.

Are there any upcoming events that we should be aware of?

We just had an Adult Network Escape Room Night on October 11! Coming up, we have our Family Halloween Party (date TBD) and Family Christmas Party on December 7.

Thank you to Nia and Nebraska Spina Bifida for their work in engaging with and educating the community about living with spina bifida, and being a source of support for individuals with spina bifida and their families.