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.
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 Illinois Department of Human Services as a disability claims adjudicator, making medical decisions for SSI and SSDI claims. Jaymie learned to be an advocate by watching her parents fight for her. She says, “They never let anyone tell them ‘it can’t be done.’ They taught me to always find a solution, even if you have to make it yourself.” She found an “instant connection” with iSACRA. “I had never talked to anyone with my SA before. People knew exactly what I was going through,” she says. She hopes to use her position as a board member to help parents of children with SA/CRS and adults with SA/CRS better understand disability laws and healthcare policies in the United States as well as in other countries. Jaymie can be contacted at email@example.com.
Jahna Berry, Vice President
Jahna Berry, an adult with SA/CRS, brings a lifetime of knowledge, experience, and networking to the iSACRA board. Jahna started one of the first SA/CRS online communities with her Yahoo! group in 1998. She says, “I can vividly remember being around 13 years old and wondering if there were others like me out there in the world, and if so, where were they? That is when the dream of a centralized place for all things iSACRA began.” She was 26 when she first met another adult with SA/CRS. “It’s a life-transforming experience I hope that we can give to all families with SA/CRS one day,” she says. As vice president, Jahna helps support other adults and parents who have questions or concerns. “I think that is the most rewarding for me. iSACRA is an important part of my life, and I can’t imagine not being a part of this amazing community!” Jahna can be contacted at firstname.lastname@example.org.
Jennifer Carlson, Trustee
Jenn Carlson is the mother of a young girl with SA/CRS. Jenn 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 theater for more than 15 years. She also has experience in the IT field and owns a small business, where she works as a doula. Jenn 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 iSACRA.” She hopes to be able to “give back to iSACRA . . . to repay the membership and organization for all that they have given Ari and our family.” Jenn can be contacted at email@example.com.
Sean Clark, Trustee
Sean Clark, who 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 iSACRA, 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.” Sean can be contacted at firstname.lastname@example.org.
Kaycee Marshall, Recording Secretary
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.” Kaycee can be contacted at email@example.com.
Jessica Rogers, President
Jessica Rogers is a young adult with SA/CRS who was born in Brazil but came to the United States as a young child and is now a college student majoring in elementary education at the University of Illinois, Urbana/Champaign. She is also an avid athlete, competing and medaling at the national and international level in Paralympic swimming and wheelchair racing. As iSACRA’s president, Jessica welcomes new members, represents and advocates for the organization, engages in networking, writes articles, and works to foster the growth of iSACRA as well as increase opportunities for persons with SA/CRS. She states, “SA/CRS has never prevented me from accomplishing my goals. I aim to fully participating in society as a responsible citizen, knowledgeable advocate, effective role model, and determined leader.” Jessica can be contacted at firstname.lastname@example.org.
Phyllis Rogers, Treasurer
Phyllis Rogers is the parent of a quiverful of children by adoption from five 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 and translation, cross-cultural issues, special education, and disability rights. She works as a sign language interpreter and 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.” Phyllis can be contacted at email@example.com.
Danielle Shaw, Honorary Member
Danielle Shaw is the mother of a teenage boy with SA/CRS. She works as an editor of medical, educational, and social sciences textbooks. Danielle 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. Danielle edits and writes content for iSACRA’s website, newsletter, and other educational materials and heads the new medical research committee. She says, “When my son was born, all the information I could find on SA/CRS was so outdated and even scary. That’s why I’m so happy to be part of iSACRA, helping to create more positive information that gives comfort and support to parents of children with SA/CRS.” Danielle can be reached at firstname.lastname@example.org.
Renee Smith, Trustee
Renee Smith, who lives in Florida, is the mother of two teenage boys, including one with SA/CRS. After having her second son, she “became a stay at home mom and dedicated all my time to my children and to countless therapies and doctor appointments for my son.” Seven years ago, she began working in her son’s OT’s office, and she says, “I love networking and meeting new families and helping them with their children’s needs. Sometimes parents call to schedule an appointment for their child, and they just need someone to talk to because we as parents can feel isolated and overwhelmed sometimes. That’s why I’m so happy and excited to be a part of this wonderful organization and to help bring awareness to SA/CRS and try to offer families any advice from my own experiences as a mom and what I’ve gone through with my son.” Renee can be contacted at email@example.com.
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 firstname.lastname@example.org.