iSACRA Board Members, June 2023

Leah Balent, President

Leah Balent was born and raised in Ohio, USA. She graduated from The Ohio State University with a degree in journalism and a minor in Spanish. She lived in Mexico as well as Los Angeles, pursuing a writing career before settling back down in Ohio. She worked as a professional organizer before the birth of her daughter Amelia. She then became pregnant with her son Jacob, who was diagnosed with SA/CRS when Leah was 20 weeks’ pregnant. After the diagnosis, Leah and her husband experienced days of darkness and uncertainty until her husband ran across the iSACRA website. This encounter was life changing, and thanks to the iSACRA support group, fear turned into hope and excitement for Jacob’s future. Leah still tries to find time for creative writing, but her main purposes in life are being a mother to her two kids and advocating for mothers who have recently received a similar or difficult diagnosis. She states, “I felt completely alone until I found the iSACRA website and joined the iSACRA support group. I want other parents and children to have the same support that gave me hope and joy during a time of fear and uncertainty.” Leah can be contacted at Leah.Balent@isacra.org.

Colleen Wright, Vice President

Colleen Wright was born and raised in Louisville, KY, 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 Salt Lake City, Utah, where she currently resides with her husband, Matt, and their two cats. She works as a paralegal at Bridge Investment Group. Colleen’s parents became aware of her diagnosis of sacral agenesis 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.

Louise Swafford, Secretary

Louisa Swafford is the parent of a young child with SA/CRS. She lives in Missouri, USA with her husband and their four children. And, don’t forget the two ducks, Biscuit and Gravy, a growing number of chickens, a pet turtle, a bearded dragon, and a dog who are also part of this busy household. 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 Scot were a foster family for several years and finalized the adoption of two children. She stresses the importance of advocacy, in both a medical and educational settings. Joining iSACRA was instrumental in helping her to connect with others who are parents of children with SA/CRS like her daughter, or who are adults with SA/CRS. This past year, Louisa served as an iSACRA Ambassador, and that experience motivated her to become an iSACRA board member. She states, “I hope to use my creative and organizational skills to benefit ISACRA.” Louisa can be reached at Louisa.Swafford@isacra.org.

Demi Porter, Trustee

Demi Porter was born and raised in Arizona, USA. She is a mother of 2 boys, one with caudal regression syndrome (CRS). She is involved in helping to support and advocate for people who need guidance in neonatal intensive care units. While her busy schedule does involve taking her kids to therapies and doctors appointments, she makes sure her kids enjoy all the things that life has to offer, including frozen yogurt dates and duck feeding adventures. She believes it’s important to enjoy the outdoors, fresh air and sunshine, so she encourages her son with CRS to hike, kayak, bike, skateboard and more! She states “I want to share the experiences we have as a family, raising a son with CRS, in hopes to help and motivate families to live to their fullest and enjoy this wonderful life and 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 Demi.Porter@isacra.org

Melissa Ann Lackey. Trustee

Born just outside of Nashville, TN, USA. Melissa is an adult with SA/CRS. Doctors told her parents she would likely never walk, and that it was doubtful she would live past her first birthday. Now at age 43, Melissa has defied these expectations. She has a bachelor’s degree in elementary education and a master’s degree in intercultural communications.  Melissa has traveled extensively, both internationally and domestically, and currently lives in Louisville, KY.  This fall, she will begin her tenth year in the classroom teaching 5th grade.  She has been married to James for 14 years and has a 10 year old son.  She states, “As an adult with SA/CRS, my contribution is simple: just sharing my life experiences as one living with this condition. From childhood, I saw how my parents dealt with questions. They raised me to be independent. Hopefully, I can encourage others.” Melissa can be contacted at MelissaAnn.Lackey@isacra.org

Lily Wright, Trustee

Lily Wright 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 Spokane, WA. Lily graduated from high school in 2022 and was directly admitted into a nursing program at Gonzaga University where she is pursuing her BSN. She is active in three clubs on campus, one being the Disabled Student Union (DSU). Lily was born with the tethered cord variant of SA/CRS as a part of VACTERL association. She is missing her coccyx and her S2-S5 sacral segments are incompletely fused. Lily did not know anyone else born with SA/CRS so when she discovered iSACRA, she jumped at the opportunity to get involved. Previously serving as a young adult ambassador for iSACRA, she connected with others and demonstrated her abilities with research and technology. Lily states, “As a board member, I want to make sure that no one ever feels alone.”

Jahna Berry, Treasurer 

Jahna Berry, an adult with SA/CRS, brings a lifetime of knowledge, experience and networking to the iSACRA board. Born in 1975, Jahna currently lives in her hometown of Dearborn, Michigan, USA, with her fiancé, Sean. She has also lived in North Carolina and Long Island, New York. Jahna has studied American Sign Language, Psychology, and Medical Office Administration. Jahna previously served as Vice President of iSACRA during the organization’s formative years and now returns as a trustee.  Jahna was born with SA/CRS at lumbar 1 and spina bifida occulta at Cervical 6/7. She is a double at-knee amputee since the age of 4, and a full-time wheelchair user. Jahna started one of the first SA/CRS online communities with her Yahoo! group in 1998. She was 26 before she first met another adult with SA/CRS. “It’s a life-transforming and very surreal experience finally seeing someone who is just like you. I hope that we can give that experience to all families, and adults, with SA/CRS. iSACRA is an important part of my life and I can’t imagine not being a part of this amazing community!” You can reach Jahna Berry at: jahna.berry@isacra.org

Administration

Phyllis Rogers, Executive Director

Phyllis Rogers serves at the will of the board, providing organizational operations including nonprofit filings. financial reporting and website support. She is the parent of a quiverful of children by adoption from five different countries who are now grown or “almost grown,” including a college graduate-a daughter with SA/CRS who now works as an elementary school teacher. 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 supervisor of sign language interpreters and mentor/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 Rogers can be contacted at phyllis.rogers@isacra.org.

Meet iSACRA’s Ambassadors