is just getting off the ground, and that is due largely to the efforts of our founding Board of Directors. This dedicated team has known each other for several years, and are working together to make a strong foundation to our organization.

Jessica Rogers, President

A young person with CRS/SA, Jessica was born in Sao Carlos, Brazil. She now makes her home in Virginia, USA. She is an avid sports woman and her accomplishments include several American junior and women's paralympic swimming records. She was selected as a member of the US paralympic team for the 2011 Parapan meet in Mexico where she won a silver medal. Recently she was selected for the junior World Games 2013 US Team. She aspires to swim in Rio for the 2016 Paralympic games . Jessica was named the junior national disabled athlete of the year by Sports 'N Spokes Magazine, 2011.

Jahna Berry, Vice President

Jahna is an adult with SA/CRS who has experienced many of the issues that SA/CRS can bring. She brings a lifetime of knowlege, experience and networking to the board. Jahna started the first SA/CRS online community with her Yahoo! group in 1998.

Danielle Shaw, Secretary

Danielle is the mother of an elementary school boy with SA/CRS. She is an editor of medical textbooks and journals. She has also been the public relations chairperson for a nonprofit organization working with the local school district to advocate on behalf of students with disabilities.

Phyllis Rogers, Treasurer

Phyllis is the parent of a quiverful of children by adoption, including a teen with SA/CRS. She has a background in interpreting/translation, cross cultural issues, special education, and disability rights. She works as a sign language interpreter and is studying part time for a PhD in the field of interpretation. Phyllis also travels extensively, usually in an effort to follow her children's sport competition activities.

Julie Hemker, Trustee

Julie is an adult with SA/CRS who has faced many of the associated challenges. An ambassador for change, she served as a disability advocate assisting in bringing an educational institution up to ADA code and regulation while toppling social barriers. Her professionalism, drive and positivity are evident in her career and personal life. Julie is also the author of a successful blog, “Living with Sacral Agenesis.”

For the present, the Board has its hands full getting launched. Once the organization is up and running, we will open the floor for nominations of additional board members. The present board will consider any nominations, and will elect any new board members.

We value your input. The board can be contacted individually at the emails listed above, or as a group at

The International Sacral Agenesis/Caudal Regression Association is a 501(c)(3) organization.

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