An Important SBA Announcement

An Important SBA Announcement

By now, I hope that you have read about the work that the Spina Bifida Association (SBA) has been engaged in recently. We shared about the success of the Third World Congress on Spina Bifida Research and Care, the work of the National Resource Center to help people find answers to the puzzling questions they face, and our efforts to influence Congress to ensure that health insurance plans can no longer deny a person with Spina Bifida coverage because they are born with Spina Bifida.


In today’s world, it is increasingly vital that our organization lead the charge to support the 177,000 people living with Spina Bifida. Our small community faces challenges like they never have before. We’ve had great success in assuring that children born with Spina Bifida become adults who live and thrive. But there is so much that we have yet to learn about aging with Spina Bifida and so many challenges yet to be solved.


As many of you know, SBA was due to hold its next National Conference in 2018. After a very extensive search for an affordable and accessible location, SBA’s Board of Directors has made the decision not to hold a National Conference next year.

We know that this is very sad news for some of you, and we want you to know that we did not make this decision lightly. Here are some of the factors that influenced this decision:

  • It has become increasingly difficult to find a hotel that can accommodate a conference of our size and with our accessibility needs at rates that are reasonable for our constituents.
  • Hotel, food & beverage, and rental costs have continued to rise, making National Conference less and less affordable for SBA and for our Spina Bifida families.
  • With an average of 700 attendees at each conference, many of whom come every year, we are not reaching the majority of nearly 177,000 people within the Spina Bifida community. We’ve tried to increase the number of people attending over the past decade, and we have not been able to do so. We believe that this is due, in large part, to the cost of the conference.
  • In response to the overall health needs of our community and the current political environment, SBA has begun shifting its priorities to focus more on research and advocacy.

We know that you probably have a lot of questions. In anticipation, we have put together this handy FAQs document. To answer any additional questions that you may have, we will hold three conference calls on:

  • Wednesday, August 9, 2017 at 7:00 pm Eastern
  • Thursday, August 10, 2017 at 7:00 pm Eastern
  • Monday, August 14, 2017 at 7:00 pm Eastern

To sign up for one of these calls, please click here.

Even though we will not be holding a National Conference next year, I do have some exciting news to share with you. In spring 2018, SBA will be holding a Spina Bifida Walk & Roll on Capitol Hill that will be open to the entire Spina Bifida community. Attendees will have the opportunity to travel to Washington, DC, participate in advocacy training, and meet with their Members of Congress. There will also be plenty of time for fun and forming connections while at the hotel.

We’re putting together the details for this lobby day now and will share them with you as soon as they are available.

This year, we have a variety of family-focused events that serve our community, and we hope you will take advantage of them! Join your community at our SBA Education Days, Walk-N-Rolls, and take part in our new program, the Get Out Enjoy Life accessible travel contest, on our Facebook page. You can also learn more about these programs via our website and blog. Next year look for our new programs, SB-You and Spina Bifida Stories.

As a public charity, our goal has always been to have the greatest impact possible on our community. Thank you for your patience as we made this very difficult decision and start a new and exciting advocacy adventure. We hope that you enjoy some of the new programs SBA will be offering or expanding in 2018 and that you will find more ways to get involved as we bring SBA to you.

With Thanks,

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Board Chair


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