About Us
Working to improve medical care and quality of life for all with Tethered Cord Syndrome
Our Goals
Raise awareness of tethered cord syndrome among physicians, patients, and the public
Provide a reliable, central resource people can turn to for information about tethered cord syndrome
Establish a patient advocacy program to assist individuals with tethered cord syndrome in finding and accessing appropriate care
Support research and legislation that will lead to increased understanding of and improved care for individuals with tethered cord syndrome
Illuminate paths to community and connection for those with tethered cord syndrome
Board of Directors
Meet our current board members!
Rebekka Smith
Chair
Rebekka is passionate about helping everyone reach their full potential through access to appropriate healthcare interventions, experiential learning, and high-quality accessible information. She is an educational consultant, writes health-related academic articles and educational materials, and has spoken at various regional and national conferences. Rebekka also has experience with small business management, parent and family mentorship programs, and programming for large events. She earned a bachelor’s degree in Recreation Therapy from Brigham Young University and a Master’s in Curriculum and Instruction from Western Governor’s University. Rebekka enjoys backpacking, raising llamas, directing musicals for local youth, and spending time with her husband and four children, one of whom lives with tethered spinal cord syndrome and multiple related physical challenges.
Courtney Morales Hofmann
Treasurer
15-year entrepreneur; she has run multiple start-ups in the staffing industry and tech industry. Courtney and her son went viral in 2023 for solving his back problems utilizing Chat GPT. Since then, Courtney has spoken at several events on AI in medicine. Courtney has won Entrepreneur of the Year from the Michigan Hispanic Chamber of Commerce and was recently nominated for the Latina awards as a top connector.
Bailey Miller
Secretary
Bailey was diagnosed with occult tethered cord syndrome at 30 years old after a 6-year long search for answers. She had her surgery last year, and since then has felt a strong calling to investigate what it means to live with medical uncertainty and with rare disease. This long period of going misdiagnosed and undiagnosed led her to pursue many twists and turns in her career and personal life, most recently in choosing to study a Master’s of Arts in Philosophy with a concentration in Bioethics. Within this field of study, Bailey is currently researching the qualitative aspects of the rare disease experience. She is very much interested in bridging the gap between patients and medical providers, academics, and researchers. At the moment, Bailey is also a hospice volunteer and Young Adult Rare Representative with the EveryLife Foundation. Prior to this, Bailey has worked in multiple non-profits, and in the fields of web design/development, mental health counseling, homeless advocacy, music, and the visual arts.
Melanie Ramsay
Community Outreach Chair
Melanie is a community organizer who aims to push the needle of proper tethered cord care forward with each patient interaction. Committed to both scientific & personal connections, she encourages the wildly misunderstood adult tethered cord population to offer their experience, wisdom & hope to others living with the condition. In March of 2023, she started “Tethered Tuesdays” a public weekly Instagram story series on her recovery from tethered cord release surgery. In September of 2023, Melanie launched a live version of Tethered Tuesdays, a virtual support group for adults living with TC. The group created a resource document & clinician database that continues to guide others as they navigate their own complex care. Melanie is a broadcasting & agency producer with 25+ years of industry experience. She earned a bachelor’s degree from Columbia College Chicago in Television Production/Direction. When she isn’t making videos with her pals, you can find her hiking the local trails.
Tevya Betzold
Compliance Officer
Tevya, a California native, earned a bachelor’s degree in science and a master’s in public administration graduating with honors. She is published in the Journal of Animal Science and has lectured around the country on different topics relating to her volunteer and humanitarian work.
Tevya has worked in the nonprofit and for-profit space for more than a decade. Her expertise includes regulatory compliance, grant administration, nonprofit best practices, Human Resources, strategic partnerships, audit supervision, and corporate risk management. In addition to her domestic nonprofit experience where she managed companies ranging in size from start-ups to >$60 million in AUM, she also advised organizations in Canada, Peru, Mexico, and Thailand. This allowed her to understand the unique aspects of business and compliance facing leaders over multijurisdictional corporations.
Tevya’s passion for strengthening individuals and building resilient organizations was born out of personal struggle. Shortly after relocating their family and dairy consulting business to Southern Utah, her husband passed away, leaving her to manage their 40-acre family farm and provide for their four children. When faced with the unthinkable, she found herself navigating life insurance, taxes, transfer of assets, regular income, and planning for retirement alone. This inspired her to pursue a career in private wealth management.
In 2024, after nearly a decade as a widow, Tevya’s life took an unexpected, happy turn when two cousins from Idaho introduced her to Fred Betzold, also a widower. They were married and have purchased a home on a ten-acre apple orchard in Weiser, Idaho, where they are writing the next chapter in their lives together. She has reclaimed her favorite roles as a full-time homemaker to their (combined) 7 children and their spouses, grandmother to 3 grandchildren, and part-time farmer/sheep herder.