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
Jessica is a college student with SA/CRS studying elementary education. Born in Brazil, she then came to Virginia, USA, but is now in Illinois for her studies and training. Jessica is an avid athlete and was named the Junior National Disabled athlete of the Year by Sports and Spokes Magazine, 2011. A Paralympic swimmer and wheelchair racer, Jessica has competed and medaled both nationally and internationally. She has represented the US at the Parapan Games in Canada and in Mexico and at the World Championships in Doha, Qatar. Jessica Rogers is committed to providing support and information to those with SA/CRS and to raising awareness about this condition worldwide. Her mottos is “Doing big things from a little chair” She states, “SA/CRS in no way prevents me from accomplishing my goals and fully participating in society as a responsible citizen, knowledgeable advocate, effective role model and determined leader.”
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 from 5 different countries who are now grown or "almost grown", including a college age daughter with SA/CRS. In addition to being known as "Jessica's mom", Phyllis has a background in interpreting/translation, cross cultural issues, special education, and disability rights. She works as a sign language interpreter/interpreter trainer and has published several works in the interpreting field. As a parent, she enjoys sharing the experience and knowledge she has gained over 20+ years in learning about and raising a child with SA/CRS. "I think one of the most important things parents can learn is that there are no limits to what your child can accomplish."
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 participating with her city on an organized effort to address disability rights within her community. "I treasure the opportunity to support as an adult with a lifetime of experience with this condition so I can support and encourage others." Julie is also the author of a successful blog, “Living with Sacral Agenesis.”
Jaymie Rae Babel, Trustee
Jaymie Rae Babel is an adult with SA/CRS. Jaymie has a degree in biological science from Eastern Illinois University. She works for the State of Illinois as a disability claims adjudicator making medical decisions for SSI and SSDI claims. Jaymie grew up seeing her parents fight for the basics in adaptive and therapeutic equipment for her. She says, “They fought my schools and even fought the legislature to try and improve health insurance and healthcare options for people with disabilities.” She found an “instant connection” in . “People knew exactly what I was going through,” she says. She hopes to use her position as a board member to “help parents and adults understand the laws. I also am interested in helping learn and understand about health and social programs for those who live in other countries.”
Jennifer Carlson, Trustee
Jennifer Carlson is the mother of a young girl with SA/CRS. Jen has a diverse set of skills, including a decade of experience in planning and executing a variety of different events, conferences, festivals, and programs locally, nationally, and even on an international level. She has worked as a stage manager and arts administrator in DC Theatre for more than 15 years. She also has experience in the IT field and owns a small business, where she works as a doula. Jen and her family and friends were big supporters of the iSACRA 5K in Virginia in 2015, with about 30 of them turning out for the event. She says, “Every step of the way we have found support, ideas, direction, and reassurances within the membership of .” She hopes to be able to “give back to . . . to repay the membership and organization for all that they have given Ari and our family.”
Sean Clark, Trustee
Sean lives in New York, is the father of a teenage girl with SA/CRS. With a B.A. in history, an M.S. in special education, and a Certificate of Advanced Studies in Educational Leadership, Sean has worked in public education for more than 20 years, with the past 12 years serving as a school principal. He says within , he hopes to “be a resource for parents who have questions or need guidance navigating the CSE and 504 process. I believe I can assist parents in effectively advocating for the child’s needs, while helping them work positively and productively with their school.” Sean adds, “It is a strong desire of mine to help build public awareness of SA/CRS and advocate for research and the needs of individuals with this rare condition.”
Kaycee Marshall, Trustee
Kaycee Marshall is a college student with SA/CRS. She is majoring in fashion design at Kent State University in Ohio and has served on several youth boards, including a nonprofit organization serving women and children who have experienced domestic abuse. Kaycee has experience with illustration software and social media and has been handling iSACRA’s Instagram and Twitter accounts, where she tries “to pick people and stories that are positive and spread awareness.” She says, “I think it is important to share our medical journeys as well as who we are individually. It's important for people and new parents to iSACRA kids to see that even though we have sacral agenesis, we are so much more than this condition.”
Renee Smith, Trustee
Renee Smith, who lives in Florida, is the mother of a teenage son with SA/CRS. She has extensive experience in dealing with different types of doctors and therapies such as OT, PT, and aquatic treatment. She also works at a pediatric therapy facility. As a board member, she hopes to “help bring more awareness to this condition and help families that are struggling.” Renee can be contacted at firstname.lastname@example.org.
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 email@example.com.