iSACRA Board Members, June 2024
Colleen Wright, President

Colleen was born and raised in Kentucky, USA. She graduated from Bellarmine University with a degree in psychology and communications. She has lived in Cincinnati, Ohio and Columbia, South Carolina before settling down in Utah, where she currently resides with her husband. She works as a paralegal for an investment group. Colleen’s parents became aware of her diagnosis of sacral agenesis (SA/CRS) when she was a late walker and was not progressing with potty training. She was officially diagnosed at the age of four. She is missing her coccyx and S2-S5 of her sacrum. This was in the 1980s, so it was isolating for Colleen and her parents not having a support group where they could share their experiences. Now, as an adult with this condition, she states, “I look forward to being a resource and a confidante to others who may be going through similar life experiences”.  Colleen can be contacted at Colleen.Wright@isacra.org.

Alison Erhardt, Vice President

Alison was born and raised in North Dakota, USA. She graduated from Dickinson State University with a degree in Music Education and a minor in Leadership. She spent the early years of her marriage helping her husband run the family ranch, as well as devoting her time and attention to their children.  She is the lucky mom to eight beautiful souls. Raising her six surviving children is truly the greatest privilege in her life. Alison currently teaches elementary music. She discovered the iSACRA organization when her son was diagnosed with sacral agenesis (SA/CRS) after five years of searching for answers. It was a relief to finally have a diagnosis for all of his symptoms but, at the same time, it was overwhelming to try to find any answers. Alison found that the iSACRA website and Facebook group offered her the best chance at understanding what to expect and how to support her son on his journey. She states, “As we continue to learn about how his SA affects him, it gives me hope to know that I have a group of people we can both turn to who will offer support. I am also thrilled at the prospect of researchers having a registry from our members in order to work towards offering better knowledge to providers in the future of healthcare.” Alison can be reached at Alison.Erhardt@isacra.org.

Louisa Swafford, Secretary

Louisa is the parent of a young child with sacral agenesis/caudal regression syndrome (SA/CRS). She lives in Missouri, USA with her husband and their four children. Louisa earned her bachelor’s degree in criminal justice with an emphasis in forensic science and a thesis in disproportionate minority confinement. Louisa and her husband were a foster family for several years and later adopted two additional children. She stresses the importance of advocacy in both medical and educational settings. Joining iSACRA was instrumental in helping her to connect with others who are parents of children with SA/CRS or who are adults with the condition. Previously, Louisa served as an iSACRA Ambassador, and that experience motivated her to become an iSACRA board member. She states, “I believe in the power of community and advocacy to transform lives. I hope to contribute to a future where every individual with SA/CRS and their families have the support, resources and voice they deserve.” Louisa can be reached at Louisa.Swafford@isacra.org.

Jahna Berry, Treasurer 

Jahna is an adult with sacral agenesis/caudal regression syndrome (SA/CRS) and spina bifida. She was born and now lives in Michigan, USA with her fiance. Raised to be fiercely independent, she brings a lifetime of experience to the board. Jahna has studied in the fields of American Sign Language and Psychology. She started one of the first online communities for individuals with SA/CRS in 1998, but she was 26 before she ever met another adult with this condition in person. Jahna has been active on the iSACRA board through several cycles. She was among the founding members of the organization and has served as a Vice President and now as Treasurer. Jahna is a wheelchair user, although as a child she walked using prosthetics after at-knee disarticulation surgery at the age of 4. She finds that wheelchair use provides her with the freedom to live life to the fullest. Jahna has many interests. She is a cat lover, a book lover, and a movie fan. She is also learning to crochet. Jahna states, “Meeting and connecting with others who have the same rare condition that you have is a life transforming experience. I hope that iSACRA can provide that experience to the children and adults we serve. iSACRA is an important part of my life and I can’t imagine not being involved in this amazing community!” jahna.berry@isacra.org

Demi Porter, Trustee

Demi was born and raised in Arizona, USA. She is a mother of a 6 year old boy with caudal regression syndrome (SA?CRS). This busy mom is active in organizing local social events for kids with disabilities and their families. While her schedule does include taking her two children to therapies and doctors appointments, she makes sure they have time to enjoy all the things that life has to offer with plenty of play dates, outings at the lake, and road trips. She believes it’s important to stay active and to enjoy the outdoors. She encourages her son with to pursue the things he loves such as archery and swimming. Demi is in school and has recently shifted her training focus from behavioral therapy to pursuit of a career as a child life specialist. As an iSACRA board member, Demi states, “I want to share the experiences we have as a family, raising a son with SA/CRS, to motivate families to live this wonderful life to it’s fullest and enjoy the incredible talents of our children with this condition. I want families to not feel alone in all of this, ever.”  Demi can be reached at contact@isacra.org

Tori Rayle Trustee

Tori was born and raised in Ohio, USA and the parent of a child with sacral agenesis/caudal regression syndrome (SA/CRS). She has studied in the fields of child development and social work. She spent a year in Texas working as a tax professional and in Georgia working with homeless populations before moving to Haiti. Tori has lived in Haiti for the last 12 1/2 years. For the past 8 1/2 years, she has been a houseparent for many children with varying needs, including a four year old with SA/CRS. Tori has cared for him from the time he was four months old. With the limited medical care and resources available in Haiti, Tori fought to get needed tests, sought out any medical opinions she could find, and even went through a year and a half long process to get a medical visa so he could get the care he needed and deserved. As to her motivation for becoming an iSACRA board member, Tori says, “I enjoy being able to support other parents who feel like they don’t have anywhere to turn because I myself was there not long ago. Finding the iSACRA group has given me a community I didn’t know I needed until I found it.” Tori can be reached at contact@isacra.org.

Lily Wright, Trustee

Lily was born in China and adopted into the U.S. when she was five and a half years old. She was raised in a military family until her dad retired and they settled in the pacific northwest area. Lily graduated from high school in 2022 and was directly admitted into a nursing program, where she is pursuing her Bachlors in Nursing (BSN). She was the president of the Disabled Student Union this past year on campus and will continue as a member of this club. Lily was born with the tethered cord variant of sacral agenesis/caudal regression syndrome (SA/CRS) as a part of VActeRL association. She is missing her S4-coccyx and most of her sacral segments are incompletely developed. Lily did not know anyone else born with SA/CRS growing up. When she discovered iSACRA organization, she jumped at the opportunity to get involved. Previously serving as a young adult iSACRA Ambassador, she is continues her service to iSACRA as a member of the iSACRA board. Throughout her time as an iSACRA Ambassador and iSACRA board member, she has connected with others and demonstrated her abilities with research and technology. Lily states, “As a board member with SA/CRS, I want to make sure that no one ever feels alone in their journey.” Lily can be reached at contact@isacra.org

Traci Taylor, Trustee 

Traci is a 49-year-old woman with sacral agenesis (SA/CRS). She was born and raised with her two older brothers in southern California. After high school she moved to central California were she received her Bachelor’s Degree in Psychology from California State University, Stanislaus, as well as her Master’s Degree in Rehabilitation Counseling from California State University, Fresno. She is currently the Director of Programs and Services at an independent living center in eastern Indiana. She has been a disability advocate for over 40 years, doing work in both the public and nonprofit sectors in California and Indiana. Traci is a Certified ADA Coordinator. She has a strong interest and background in the Americans with Disabilities Act (ADA), accessible housing/building modifications, and educational accommodations in the K-12 and post-secondary education field. In her downtime, Traci enjoys advocating, encouraging, and empowering others as well as being out nature, around animals of all kinds, and adaptive sports. Traci says, “I hope to be able to contribute the support of the valuable programs and services offered by iSACRA as an iSACRA board member and look forward to serving in this capacity. Traci can be reached at contact@isacra.org.

Jessica Elsberry, Trustee

Jessica is an outgoing young adult with sacral agenesis/caudal regression syndrome (SA/CRS) from Nebraska, USA. She enjoys talking to individuals and groups. She is especially fond of talking to kids who also have SA/CRS, and has been active as an iSACRA Ambassador with the iSACRA Kids Chats. Jessica also enjoys regularly attending the National Wheelchair Sports Camp in Minnesota. She recalls that when she was growing up, she wished for the opportunity to meet and talk to different people who knew exactly what she was going through. Jessica gained experience with advocacy when she was in high school. She spoke to her hometown’s city council to create wheelchair accessible streets. This success set her on the road to being a better self-advocate as well as an advocate for others.   Jessica received her degree in Radio and Television Broadcasting from Northeast Community College and is now working at a television station as a Technical Media Operator. Jessica says, “My friends say that I am tenacious because I never give up, and I hope to support the mission of iSACRA with passion and determination.” Jessica can be reached at contact@isacra.org.

Administration

Phyllis Rogers, Executive Director

Phyllis lives in Virginia and volunteers to serve at the will of the iSACRA board, providing organizational operations including nonprofit filings. financial reporting and website support. She is the parent of 8 children by international adoption from five different countries who are now grown to adulthood. One of her daughters, Jessica, has sacral agenesis/caudal regression syndorme (SA/CRS) and grew up heavily involved in paralympic sports. Jessica was also instrumental in the founding of iSACRA and served as it’s president for 6 years. Jessica handed over the operational tasks to “mom” as she went on to pursue her college degree and career in elementary education.
In addition to being known as “Jessica’s mom,” Phyllis has a background in interpreting and translation, cross-cultural communication, administration, special education, and disability rights. She is semi-retired, having worked as a sign language interpreter, mentor/interpreter trainer and administrator for more than 3 decades. She 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 Rogers can be contacted at phyllis.rogers@isacra.org.

Meet iSACRA’s Ambassadors