The story of iSACRA is one of individuals coming together to create a community. It took Jahna Berry, an adult with SA/CRS who wanted to make those connections happen and started an email listing for those with SA/CRS whom she had come in contact with over the years. It took a young teenager, Jessica Rogers, an athlete who had made connections with others with SA/CRS through disability sports to leverage her wheelchair basketball tournament in Philadelphia, Pennsylvania, as an event where members of the email list could finally meet face to face. It took Jessica’s mom, Phyllis Rogers, a single adoptive parent of 8 children, as a force to organize that first gathering.

iSACRA had not yet been born, but the spark ignited. Jessica started up a website and a Facebook group and contacted those she had met in Philadelphia to ask them to join her in setting up an international organization. Jahna said yes, of course, because this type of organization had long been her dream. Connie Morrisroe, a parent of a child with SA/CRS and VACTERL association, said yes, as did Danielle Shaw, parent of a child with SA/CRS and professional editor. Along with Jessica, these passionate individuals became the “founding five.” They had little knowledge of the complexities of running an organization, but they could already see how important it was for individuals and families to connect, so they determined to make it happen.

Jahna’s friend, Daniel Curry, volunteered to become the Executive Director because he had a background in setting up nonprofit organizations. After playing around with the wording, he suggested the name “International Sacral Agenesis/Caudal Regression Association,” or iSACRA for short. It was perfect! Bylaws were drafted, and Connie offered her home in New Jersey as a meeting place for the first board meeting. That required a drive through heavy traffic and across several states, but all made it and met around the dining room table in Connie’s home  in the spring of 2012. There, they accepted the daunting titles of “President” (Jessica Rogers at age 15), “Vice President” (Jahna Berry), “Treasurer” (Phyllis Rogers), “Recording Secretary” (Danielle Shaw), and “Trustee” (Connie Morrisroe).

The iSACRA articles of incorporation were drafted and signed May 27, 2012 and our official letter of incorporation arrived June 6th, 2012.  The officers returned to Connie Morrisroe’s home on June 22, 2012 and began the long process of filing for nonprofit status with the Internal Revenue Service. This effort included raising funds for the application fee. T-shirt sales, coin jars, and a generous gift from an individual with SA/CRS, Mr. Dan Philbin, brought the organization to this milestone. iSACRA became an official nonprofit 501 (c) (3) organization in 2014. Since then, the organization has grown to more than 1000 individuals and families. Meet-ups and even a mini-conference continue to draw people together in person, and an active Facebook group communication supports those near and far in more than 50 different countries. The importance of coming together, which was a driving force behind the activity of the “founding five,” continues to be a value as the organization moves into the future.