Tethered Cord Support Alliance

Susan Chalela, MPT

Dr. Linda Bluestein, MD, PhD

Dr. Petra M. Klinge, MD, PhD

Patricia J. Stott DPT, MS, ATC, CHT

Dr Jeffrey Greenfield, MD, PhD

Dr. Kara Saperston, MD, PhD

Danielle Jolliff, PT, CAFS

Stay Mobile Physical Therapy Owner | Solon, OH

Danielle is a physical therapist with 15+ years of experience, undergraduate degree from Ohio University, and a Master of Physical Therapy from Walsh University. She has extensive advanced training in biomechanics, functional movement taping, myofascial cupping, manual therapy, ACL injury prevention, and connective tissue disorders. Her daughter was diagnosed with tethered cord syndrome at age 11. Navigating her daughter's tethered cord syndrome diagnosis and surgery has given Danielle both clinical expertise and lived experience as a caregiver to understand some of the challenges of rare disease diagnosis, complex medical decisions, and managing chronic conditions. Inspired by this journey Danielle created a physical therapy practice dedicated to patients with complex conditions—providing the time, specialized care, and understanding needed to improve function, manage symptoms, and enhance quality of life. She is committed to advancing awareness and education within the medical community about tethered cord syndrome to improve care and quality of life for patients and families.

Rebekka Smith

President

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.

Melanie Ramsay

Vice President

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.

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.

Kaleigh Best

Secretary

Kaleigh Best is a dedicated advocate for individuals with Tethered Cord Syndrome and their families. After years of searching for answers to her daughter’s complex symptoms and encountering frequent dismissal, Kaleigh and her family pursued care internationally. Her daughter experienced meaningful relief following tethered cord release surgery in Barcelona, Spain, while continuing to navigate ongoing care needs locally. As Secretary of the Tethered Cord Support Alliance and a Peer Support Mentor, Kaleigh is committed to supporting families through empathy, practical insight, and a deep respect for each family’s unique journey. She is passionate about improving recognition and understanding of Tethered Cord Syndrome and ensuring families feel heard, supported, and empowered. Kaleigh lives in Kelowna, British Columbia, Canada with her husband and daughter. Kaleigh enjoys her work helping students and teachers understand their unique brain and how they can learn best in her role as a School Psychologist. She also enjoys time outdoors with her family as well as quieter moments with a cup of tea and a good book or puzzle.

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.

Mari Yentzer Rains

Events Coordinator

Mari Yentzer Rains gained her Triple-Rare Disease patient badge with her recent rare disease diagnosis of Tethered Cord Syndrome. Her body may seem like a “lemon” but she’s turning lemons into lemonade, for herself and others! Despite her disabilities, Mari (pronounced Muh-rye) has worked hard to be a lifelong learner and achieve a fulfilling, successful career. Her career roles have included: business management professor (at her alma mater University of Central Florida), management consultant, non-profit leader, corporate trainer, and conference speaker for more than 100 engagements. Mari has applied her education and career experiences to become a medical researcher, coach, patient advocate, physician/patient liaison, legislative advocate, health educator since 2008. She is a fun, energizing, “edu-taining” speaker for topics about Rare Diseases; Disability in the Workplace; Patient Self-Advocacy; Patient/Physician Communication; and DEIBA: Diversity, Equity, Inclusion, Belonging, & Accessibility. Mari also served as Executive Director to three non-profit agencies (with 200 – 5,000 members). She facilitated Board strategic planning, managed conferences & events (Virtual, In-Person & Hybrid), led association growth & member engagement, developed sponsorship & fundraising campaigns, oversaw financial and day to day operations, and designed education certification programs & secured Continuing Education Units (CEUs). Mari is excited to bring her passion and experience to the Tethered Cord Support Alliance startup team & members.

Kimberly Orrison

Newsletter Coordinator

Kimberly is a lifelong tethered cord patient who spent years navigating symptoms before having the language or a diagnosis to explain them. Her lived experience shapes her compassion for others living with complex, often misunderstood conditions. For over a decade, Kimberly has owned and operated a photography business, where her work has centered on capturing real life as it unfolds – connection, emotion, and the beauty found in ordinary moments. Creativity has long been a steady presence in her life, offering both expression and grounding through seasons of uncertainty. After tethered cord surgery in October 2024, Kimberly felt a shift in her health and perspective, inspiring her to pursue patient advocacy and expand understanding of tethered cord syndrome with the goal of helping shorten diagnostic timelines and reduce the isolation many patients face. In addition, Kimberly supports the daily operations of her family’s cybersecurity and IT business in a part-time administrative role. Across all areas of her life, she values care, and connection, and is committed to supporting education, awareness, and patient advocacy efforts that help individuals and families feel seen, believed, and less alone.

Bethany Jensen

General Editor

Bethany grew up in a family of readers and writers, surrounded by books and imagination. An aspiring editor, she plans to study English in college. Bethany hopes to grow in her leadership and communications skills so she may better interact with the people around her and make a positive influence in the world. Bethany loves stargazing, theatre, and painting, as well as picking up a good book on the weekend.