Our Team

Executive Team

Lonnie Zeltzer, MD
Lonnie Zeltzer, MDFounder and President

Lonnie Zeltzer, M.D., is a Distinguished Research Professor of Pediatrics, Anesthesiology, Psychiatry and Biobehavioral Sciences at the David Geffen School of Medicine at UCLA and Immediate Past-Director of the UCLA Pediatric Pain and Palliative Care Program. She is a co-author on the Institute of Medicine report on Transforming Pain in America and is a member of the national steering committee assigned to provide directions for pain research at the National Institutes of Health (NIH).  She has received, among other awards, a Mayday Pain and Policy Fellowship and the 2005 Jeffrey Lawson Award for Advocacy in Children’s Pain Relief from the American Pain Society (APS).  Her UCLA integrative pediatric pain program received a 2009 Clinical Centers of Excellence in Pain Management Award from APS and a 2012 award from the Southern California Cancer Pain Initiative.  She is active in advocacy for pain care and research. She was an invited member of the Institute of Medicine National Expert Panel on pain in American and was a co-author of the IOM publication on the committee findings in 2011. She was an invited member of the Centers for Disease Control (CDC) Special Advisor on The State of Opioids in America. She is also an invited member of the FDA Committee on Analgesia, Anesthesia, and Addiction, where new pain-related drugs are given FDA approval or not, as well as an invited member of the Expert Advisory Committee on Hemoglobinopathies as a pain expert for the National Heart, Lung, and Blood Institute (NHLBI) at NIH.  She is also on an expert panel for the NIH on a national study on a mind-body intervention for teens with fibromyalgia. She is also a member of the national Autism Think Tank as a pain expert in autism. Her research includes yoga, mindfulness, hypnotherapy, and other self-help interventions, including mobile technologies, to help children and adolescents who have chronic pain, as well as understanding biopsychosocial pain mechanisms in irritable bowel syndrome, cancer, sickle cell disease, headaches, dysmenorrhea, and other conditions. She has over 350 research publications on childhood pain and complementary therapies, has written more than 80 chapters, and published her first book for parents on chronic pain in childhood (HarperCollins, 2005) and her second book for parents on chronic pain in children and young adults (Shilysca Press, 2016).

Georgia Weston, MSW
Georgia Weston, MSWExecutive Director

Georgia Weston is the author of two books, Vienna’s Waiting and PAIN: An Owner’s Manual, where she provides insight into the mysterious world of chronic pain through her own story and the stories of others. In 2011, she founded the Teen Pain Help Foundation, a 501(c)3 charitable corporation created to help children and adolescents with chronic pain. Since founding the Teen Pain Help Foundation, Georgia has served as the Executive Director, raising funds for treatment, research, education, and increased public awareness of pediatric chronic pain. She also co-founded and was the Director of Programming for Art Rx, strengthening the partnership between the USC Suzanne Dworak-Peck School of Social Work and the USC Keck School of Medicine, specifically to better understand how art impacts pain. Georgia has experience creating and leading programs for organizations that provide therapeutic services for struggling individuals and families. She also has clinical social work experience, both as an outpatient therapist and residential therapist, for youth dealing with complex cognitive, behavioral, and social needs. In addition to her work with chyp, Georgia is a Research Associate on a Rally grant for an adolescent/young adult cancer pain telemedicine intervention study with the UCLA Pediatric Pain Research Program. Georgia has a Bachelor of Arts in psychology, with a minor in art, from St. Edward’s University. She has a Master of Social Work degree from the University of Southern California, with a concentration in Children, Youth, and Families, as well as a focus in Child and Adolescent Mental Health. In recognition of her humanitarian services, Georgia received the David Chow Humanitarian Foundation Award for 2019. Georgia is dedicated to empowering youth with chronic pain and their families through creative healing techniques and social support.

Olivia Aviera
Olivia AvieraProgram Coordinator

Olivia recently graduated with a BA from Pitzer College. She majored in Psychology and minored in Spanish. She has been interested in the field of psychology from a young age and worked for a teen crisis hotline during high school. During her undergraduate program, Olivia gained experience working with different psychological populations through her time leading creative writing and poetry workshops for incarcerated adolescents in a secure juvenile detention center and providing milieu therapy in an inpatient psychiatric hospital. She also studied abroad in Ecuador and during her time there she worked alongside an Educational Psychologist who provided evaluations and resources for children and adolescents with learning difficulties in an outpatient community medical and psychological clinic. Olivia hopes to become a clinical therapist and plans to continue her education in a Masters program for Marriage and Family Therapy. Some of Olivia’s other interests include writing, singing, and fitness.

Katherina Tanson
Katherina TansonResearch Assistant

Katherina Tanson is a first-year medical student at the David Geffen School of Medicine at UCLA. She is one of twenty-four students in the Charles R. Drew/UCLA Medical Education program, which uniquely focuses on addressing healthcare disparities while promoting leaders in medicine. Most recently, she serves as Co-President of the Student National Medical Association (SNMA) and is a part of the literary selection committee of her institution’s “The Beat” Journal that highlights literary and artistic expression in medicine. In 2018, Katherina received her BS in Biology from Drexel University where she graduated Magna Cum Laude. During her undergraduate education, Katherina dedicated her time to serving the children of Philadelphia by volunteering at the Children’s Hospital of Philadelphia, which continued to inspire her passion for pediatrics. Additionally, she serves as mentor for high school and college students who wish to pursue careers in medicine. In her free time, Katherina enjoys journaling, writing poetry, and reading novels. She hopes to combine her love for medicine and literature in the future.

Rebecca Stein, ACSW
Rebecca Stein, ACSWGroup Facilitator

Rebecca Stein is a psychotherapist who graduated Phi Betta Kappa from The University of Georgia, and later went on to receive her graduate degree from The University of Southern California. She has personally experienced the powerful benefits of connecting with others and using the arts to ameliorate her own chronic pain. She is a firm believer in the mind-body connection.

She credits her trainings at The Relational Center to providing her with greater insight into the biological and psychological healing effects of connection and creative expression.  She also credits The Pain Psychology Center for teaching her a combination of psychodynamic, cognitive behavioral, and somatic therapies to aid in treating chronic pain. She combines these two experiences to influence how she works with teens suffering from chronic pain. At chyp, Rebecca co-facilitates teen and caregiver support groups under the supervision of Diana Taylor, PhD. Rebecca currently provides individual psychotherapy for teens and adults with chronic pain, as well as their respective caregivers, at Thomas J. Pier Therapy. Rebecca continues to see patients for short-term Cognitive-Behavioral Therapy (CBT) at UCLA Medicine & Pediatrics.

Jonathan Pachulski
Jonathan PachulskiExecutive Director

Bio coming soon

Board of Directors

Cindy McCann
Cindy McCannVice President

Cindy’s career began as a junior high and high school mathematics teacher, however she has worked predominately in the commercial real estate industry. She has been involved in the acquisition and disposition of office buildings and retail centers, working with Lenders to obtain loans, negotiating Lease Agreements, reviewing corporate operating statements and financial information, overseeing construction projects, and managing property.

Her favorite and most rewarding role has been raising three extraordinary sons and one daughter with her husband of 29 years.  While in elementary school, their youngest son was diagnosed with chronic pain, which was the beginning of her role as a parent of a child with pain.  In addition to trying to keep balance in the home, she coordinated her son’s multiple doctor and treatment appointments, learned about the functions of a variety of medications, researched conventional and non-conventional treatments, and dealt with the complexities of medical insurance procedures.

Cindy has been involved in several community service projects in Bakersfield, California, specifically as a past board member for The Boys and Girls Club and The Bakersfield Play Center Preschool.  She is pleased and honored to be joining the team of the Board of Directors for Creative Healing for Youth in Pain.

Maya Iwanaga Pinkner, JD
Maya Iwanaga Pinkner, JDTreasurer

Maya is a graduate of UCLA and the University of California, Hastings College of the Law. She began her career as a litigator at Gibson, Dunn & Crutcher, and thereafter served as Vice President of Legal Affairs in the Television Division of Paramount Pictures. She left Paramount to become a full-time stay-at-home mom to her three children, who are not so little anymore. Maya and her husband Jeff met Lonnie Zeltzer when their then nine-year-old son was diagnosed with Chronic Regional Pain Syndrome. Under the care of Dr. Zeltzer and her incredible team of healers and therapists, their son went from being confined to a wheelchair, to running across a lacrosse field. After witnessing, first hand, the incredible power of the mind-body connection and the value of creative healing techniques, they committed themselves to helping others gain access to Dr. Zeltzer’s innovative and compassionate pain treatment programs.

Tina Bryson, PhD, LCSW
Tina Bryson, PhD, LCSW

Dr. Tina Payne Bryson is the co-author (with Dan Siegel) of two New York Times Best Sellers—The Whole-Brain Child and No-Drama Discipline—each of which has been translated into over forty languages, as well as The Yes Brain and two upcoming titles, The Power of Showing Up and Bottom Line for Baby. She is the Founder and Executive Director of The Center for Connection, a multidisciplinary clinical practice, and of The Play Strong Institute, a center devoted to the study, research, and practice of play therapy through a neurodevelopmental lens. Dr. Bryson keynotes conferences and conducts workshops for parents, educators, and clinicians all over the world, and she frequently consults with schools, businesses, and other organizations. An LCSW, Tina is a graduate of Baylor University with a Ph.D. from USC. The most important part of her bio, she says, is that she’s a mom to her three boys. You can learn more about Dr. Bryson at TinaBryson.com.

Risë Barbakow
Risë Barbakow

A Los Angeles native, Risë started her career as a research assistant in Neurotology at Harbor General Hospital and UCLA. She screened patients with chronic disorders of the inner ear, specifically testing for acoustic neuroma.

She then became a stay at home mom to her five children. While taking care of her family, Risë was also very involved in a handful of non profits in the Santa Clarita Valley, specifically the Boys and Girls Club of Santa Clarita and the Child and Family Center of the Santa Clarita Valley.  For the past seven years, Rise has been the caretaker for her late husband who suffered from Alzheimer’s.

She is very passionate about helping others find ways to manage their pain. After fracturing her vertebrae after a bad fall, she has since suffered from chronic back pain as well as osteoporosis. She is honored and very excited to be on the Board of Directors for Creative Healing for Youth in Pain

Dana Pachulski
Dana Pachulski

Dana Pachulski struggled as a child with undiagnosed medical issues for years. After being diagnosed with chronic IBS, she learned to put her mind to work and look creatively at medicine (especially in the absence of a diagnosis). Dana is a board member of the UCLA Resnick Neuropsychiatric Hospital, Co-Chair of the Regenerative Medicine Institute Campaign for Cedars-Sinai Medical Center, and Vice Chair of Cedar-Sinai’s Innovation Center Project for the Board of Governors.

Clinical Advisory Board

Sarah Martin, PhD
Sarah Martin, PhD

Dr. Sarah Martin is a licensed clinical psychologist and a postdoctoral fellow in the UCLA Pediatric Pain and Palliative Care Program. Sarah received her Ph.D. in Clinical Psychology from Georgia State University and completed her clinical internship at the Warren Alpert Medical School of Brown University. As a doctoral student in the Child Health and Medical Pain Lab, Sarah was interested in how psychological and social factors affect pain experiences in youth. Sarah completed most of her clinical training in pediatric and hospital settings, providing cognitive-behavioral interventions to children and young adults with medical conditions. She also received focused supervision on the needs of underrepresented pediatric patients with hematology and oncology conditions. Currently, Sarah’s research – funded by the National Institutes of Health – examines effects of self-hypnosis and social factors on physiological pain responses in adolescents with sickle cell disease. She has multiple publications in peer-reviewed journals and presents her research at national and international conferences. On a community level, Sarah serves as a board member for a non-profit organization – Responsibility – that provides education to children living in trash dump communities in Mexico and Nicaragua. When not in the research lab or clinic, Sarah enjoys live music, the beach, snowboarding, traveling, and running with (or after) her very energetic dog. Sarah’s professional experiences continue to foster her appreciation for the power of mind-body interventions and social connection for youth with pain conditions.

Elizabeth Donovan, PhD
Elizabeth Donovan, PhD

Dr. Elizabeth Donovan is a research psychologist with expertise in developmental and health psychology. Her research centers around empowering people to better manage their health. Liz develops and evaluates psychosocial interventions delivered using technology. Most of these programs have focused on helping people learn the skills to better manage their pain. Liz also uses qualitative research methods to document patients’ experiences in their own voices. She has been an investigator on grants from the National Institutes of Health, Agency for Healthcare Research & Quality and the Patient-Centered Outcomes Research Institute and have published the results of her research in a range of peer-reviewed journals.

Anya Griffin, PhD
Anya Griffin, PhD

Dr. Anya Griffin is a pediatric psychologist and Assistant Clinical Professor in the Department of Anesthesiology, Pain, and Perioperative Medicine at the Stanford University School of Medicine. She is the clinical director of the Stanford Children’s Health Pediatric Rehabilitation Program (PReP), an intensive pain management program for pediatric chronic pain involving an interdisciplinary treatment team of occupational therapists, physical therapists, pain medicine providers, and pain psychologists. She has trained and worked in the field of pediatric psychology primarily with children and adolescents diagnosed with chronic pain, Sickle Cell Disease, and cancer. Dr. Griffin’s research interests include pediatric chronic pain, mind-body interventions for pediatric pain management, oncology, sickle cell disease, and improving the process of transition from pediatric to adult care. She is also a board certified Dance/Movement Therapist and completed her training at UCLA. She was awarded a grant in 2015 from the Stanford Medicine and Muse for her project “Capturing Pain: Photographic storytelling of youth with chronic pain.”

Neil Schechter, MD
Neil Schechter, MD

Dr. Neil Schechter is presently the Director of the Chronic Pain Clinic at Boston Children’s Hospital, Senior Associate in Pain Medicine in the Department of Anesthesiology, Critical Care and Pain Medicine at Boston Children’s Hospital and Associate Professor of Anesthesiology at Harvard Medical School.  He was previously the Chief of Pain Medicine at Connecticut Children’s Medical Center and Professor of Pediatrics at the University of Connecticut School of Medicine.  Dr. Schechter is also the founder and Chief Executive Officer of ChildKind International (www.childkindinternational.org), a non-profit organization which emerged from the Special Interest Group on Pain in Childhood of the International Association for the Study of Pain and is now endorsed by 12 other professional societies.  ChildKind recognizes hospitals that have made an institutional commitment to providing excellent pain care to the children that they serve.  ChildKind provides technical assistance to institutions trying to improve the quality of comfort care that they offer.

Dr. Schechter received his medical degree from the University of Connecticut School of Medicine where he also trained in pediatrics.  He did fellowships in developmental and behavioral pediatrics as well as psychosomatic pediatrics at Boston Children’s Hospital and the Harvard Medical School.  Dr. Schechter has authored over 100 research papers, books, and chapters on pediatric pain. He is the senior author of Pain in Infants, Children, and Adolescents, the dominant text in the field. His main research focus has been on documenting disparities in pain treatment and subsequently the recognition and treatment of common pain problems such as needle pain and chronic pain.  Recently, his work has focused on institutional change and advocacy around pain

Dr. Schechter has served on or chaired many of the major national and international consensus committees that have addressed pediatric pain including the World Health Organization Expert Committee on Cancer Pain in Children, the Chronic Pain Task Force of the American Pain Society, the Agency for Health Care Policy and Research Acute Pain Guidelines, the Cochrane Review Committee on Antidepressant and Anticonvulsant Use for Chronic Pain in Children, the National Institute of Medicine Committee on Palliative Care, the Rome Foundation Committee on Functional Gastrointestinal Disorders in Children and currently serves on the Lancet Commission on Paediatric Pain.  Recently, he served on the National Institutes of Health Inter-agency Committee on the Transition from Acute to Chronic Pain whose deliberations were published in Nature Neuroscience.  He has lectured all over the world and has given numerous named lectureships.

For his work, Dr. Schechter has received numerous awards including the Jeffrey Lawson Award of the American Pain Society for advocacy in pediatric pain, the major US award in the field.  His organization, ChildKind, has received the Robert Addison Award of the American Academy of Pain Medicine for advocacy and international collaboration in pain medicine.

Shelley Segal, PsyD
Shelley Segal, PsyD

Dr. Shelley Segal is a licensed clinical psychologist in California since 2004. She received her PsyD from Pepperdine University and completed an internship at the Wright Institute Los Angeles. Her postdoctoral training was at UCLA’s David Geffen School of Medicine and Neuropsychiatric Institute and Hospital. While at UCLA she worked with medical and nursing staff providing psychological treatment for inpatients and their families in the Department of Neurorehabilitation. At the Revlon Breast Center, she received training in assessment, interviewing and making treatment recommendations for breast cancer patients in an integrative treatment program.

Upon completion of her postdoctoral training, Dr. Segal was invited to be a member of the UCLA Pediatric Pain Program. In 2009 this multidisciplinary program received a national award for Clinical Centers of Excellence from the American Pain Society (APS). She continues to collaborate with this integrative team of healthcare professionals at Whole Child LA (WCLA)… “one of the country’s premier providers of integrative mind-body treatment for children suffering pain, stress, and many common disabling conditions which can be arrested and treated before they become chronic lifelong struggles.”

Dr. Segal has provided clinical supervision for Masters level students at Pepperdine University and Postdoctoral Fellows at UCLA.  She is an Allied Staff member in the Department of Psychiatry at UCLA Resnick Neuropsychiatric Institute and Ronald Reagan Medical Center.

At her private practice office in Encino, California, Dr. Segal specializes in treating adolescents and adults who suffer from chronic pain with goals to help a person live a better quality of life that is not consumed or controlled by pain. Through psychotherapy, a patient learns techniques for coping with the many issues that arise related to having chronic pain as well as learning to understand and manage long-term issues that interfere with well-being. It’s known that chronic pain not only impacts the individual but also family members who are living with and supporting someone in pain. Her other focuses of psychotherapy include treating mood and anxiety disorders, self-esteem issues and life and relationship problems as well as medical and neurological disorders.

In her free time, Dr. Segal enjoys hiking and traveling, spending time at the beach and being with family and friends.

Samantha Levy, PhD
Samantha Levy, PhD

Samantha Levy, Ph.D. is a clinical psychologist who received her Ph.D. from Georgia State University in the Child and Family specialty track. During her clinical child internship at UCLA in the child track, she became involved with the Pediatric Pain Program (PPP). Subsequently, she obtained her postdoctoral training with the PPP. Depending upon the case, Dr. Levy works either with whole families, individual children/teens, or parents. She employs an array of psychological orientations (e.g. CBT, play therapy, mindfulness, meditation), to help the children/teens with their pain and any accompanying emotional issues. She helps the parents and patients understand the connections between the physical pain and emotional difficulties (mind/body connection). She teaches parenting skills and helps parents make plans to facilitate change in their children, such as in their difficult struggle to give their children the courage to begin functioning more fully in the world once again. Dr. Levy is open to conducting child, teen and parent support groups when there is interest.

Diane Poladian, PT, DPT, OCS
Diane Poladian, PT, DPT, OCS

Diane graduated with her Bachelor of Science in Health Science and her Certificate in Physical Therapy from California State University, Northridge. She has since completed her clinical doctorate degree with a specialization in musculoskeletal physical therapy practice from Evidence in Motion Institute of Health Studies. She is currently Board Certified by the American Physical Therapy Association in Orthopedic Physical Therapy. She initially worked at Northridge Hospital Medical Center, where she became certified through the Biofeedback Society of California to utilize biofeedback with patients with chronic pain. She joined Progressive Physical Therapy family in 1985 and became a member of the Pediatric Pain Management Team at UCLA in 2001, providing biofeedback and physical therapy services to children with chronic pain in. She is currently a member of Whole Child Los Angeles and a member of Creative Healing for Youth in Pain. Diane is currently a member of the American Physical Therapy Association and the American Academy of Orthopedic Manual Therapists.

Soumitri Sil, PhD
Soumitri Sil, PhD

Soumitri Sil, PhD, is an Assistant Professor of Pediatrics at Emory University School of Medicine in Atlanta, GA and Clinical Psychologist in the Aflac Cancer and Blood Disorders Center at Children’s Healthcare of Atlanta. She is the Founder and Director of the Aflac Pediatric Psychology Clinic, an outpatient therapy program for children, adolescents, and families receiving care within the Aflac Cancer and Blood Disorders Center. Through this program, she is committed to providing evidence-based care to support the health and well-being of our youth and their families. Her research and clinical expertise in pediatric pain management focuses on the development and evaluation of behavioral interventions to promote the health and functioning of children and adolescents with complex chronic pain conditions. Her broad research interest centers on the assessment and treatment of chronic pain in children and adolescents with sickle cell disease funded by the National Institutes of Health.

Sara Ahola Kohut, PhD, CPsych
Sara Ahola Kohut, PhD, CPsych

Sara Ahola Kohut is a clinical health psychologist and researcher at the Hospital for Sick Children. She holds appointments within the SickKids Research Institute as well as both the Department of Psychiatry and Institutes for Medical Science at the University of Toronto. Clinically, Dr. Ahola Kohut works exclusively with children and adolescents living with chronic disease and their families. Her program works exclusively with children and adolescents living with chronic disease and covers two main foci: 1. building meaningful peer and social supports and 2. mindfulness-based approaches to living with chronic disease (exploring both mechanisms and interventions). Dr. AholaKohut’s work also capitalizes on innovative approaches via the Internet to improve access to resources and interventions.

Ginny Thompson, LPC, RYT500
Ginny Thompson, LPC, RYT500

Ginny Thompson, LPC, RYT500 is a licensed professional counselor and 500-hour certified yoga teacher. After completing her Masters degree in Professional Counseling in 2011 at Georgia State University she focused her clinical work in psychological trauma and play therapy in Boston. Training with Bessel van dor Kolk, MD and his faculty at the Justice Resource Institute inspired further study and integration of the mind-body connection to heal trauma induced emotional and physical pain. Ginny joined the psychology team at the Aflac Cancer and Blood Disorder Center at Children’s Healthcare of Atlanta in 2014 where she has provided psychological support services to patients and families living with primarily a cancer or sickle cell disease diagnosis. She further developed her mind-body skills living and working at a yoga retreat center in Sweden and a yoga school in Baja California Sur, Mexico providing mindfulness, yoga and therapeutic support services. Ginny currently lives in Atlanta and provides counseling and yoga services primarily through her private practice, Dharma Counseling and Yoga while continuing to support patients at Children’s Healthcare of Atlanta.

Rachael Coakley, PhD
Rachael Coakley, PhD

Dr. Rachael Coakley is pediatric pain psychologist in the Department of Department of Anesthesia, Critical Care and Pain Medicine at Boston Children’s Hospital, where she serves as the Director of Clinical Innovation and Outreach in Pain Medicine and the Associate Director of Psychological Services.  Additionally, she is Founder and Director of “The Comfort Ability,” an internationally disseminated program that teaches evidence-based pain management skills to adolescents with chronic pain and their parents.  Dr. Coakley is an Assistant Professor of Psychology, Harvard Medical School and holds national and international leadership positions.

Dr. Coakley completed her undergraduate work at The University of Pennsylvania and her doctoral studies at Loyola University in Chicago.  She completed fellowship at Boston Children’s Hospital and joined the Consultation Liaison Service for one year prior to beginning her current position in the Pain Treatment Service in 2006.

Dr. Coakley’s career focuses on translational research of evidence-based psychological intervention for pediatric pain management.  Her program, “The Comfort Ability,” is currently licensed by children’s hospitals throughout the US, Canada and Australia.  She has also developed a video-based intervention for sickle cell pain that is also widely disseminated. For her work in program development and for enhancing access to clinical care for patients with chronic pain, she was honored with the 2020 Carolyn Schroeder Award, a national recognition from the American Psychological Association for outstanding clinical practice.

Outside her work in program development, Dr. Coakley enjoys writing and lecturing to help educate parents and providers about chronic pain.  Her 2016 book, “When Your Child Hurts: Effective Strategies to Increase Comfort, Reduce Stress and Break the Cycle of Chronic Pain”(Yale University Press), won a national book award for best parenting book (NAPPA).  Her writing is also featured in her ongoing Psychology Today column, the Washington Post, and numerous other publications.

Mariela Nava, DNP, CPNP
Mariela Nava, DNP, CPNP

Mariela C. Nava is a pediatric nurse practitioner with many years of experience who specializes in care of the adolescent. She completed a one-year fellowship with Dr. Lonnie Zeltzer at the UCLA Pediatric Pain and Palliative Care Program in 2017 and presently works with youth with chronic pain in addition to pediatric primary care at Kaiser Permanente. The exposure to children with chronic pain and the obstacles faced in all aspects of life, including their medical care experiences, was a  life-changing experience for Mariela.

Mariela completed the Pediatric Nurse Practitioner program and obtained her MSN from California State University Los Angeles.  She obtained her Doctor of Nursing Practice from Azusa Pacific University in 2016

Rachel Zoffness, PhD
Rachel Zoffness, PhD

Rachel Zoffness PhD is a pain psychologist, educator, medical consultant, author, and leader in the field of pain medicine. She serves on the Boards of the Society of Pediatric Pain Medicine; the American Association of Pain Psychology, where she founded the Pediatric Division; and CHYP. Dr. Zoffness is an Assistant Clinical Professor at the UCSF School of Medicine, where she teaches pain education for medical residents. She authored The Chronic Pain and Illness Workbook for Teens, the first book of its kind to offer child-friendly pain management techniques for children, teens, parents and providers. A knowledge-mobilizer, she piloted the Psychology Today column “Pain, Explained,” and created a multidisciplinary pain-training program for health providers. She writes for major scientific and lay publications, speaks at international conferences, and consults on the development of interdisciplinary pain programs around the world. Dr. Zoffness trained at Brown University, Columbia University, UCSD, SDSU, the NYU Child Study Center, and St. Luke’s-Mt. Sinai Hospital in NYC. Her second book, The Pain Management Workbook, a book for adults offering pain education and science-based techniques for pain management, was released in December 2020.

Arts Council

Dominic Quagliozzi
Dominic Quagliozzi

Dominic Quagliozzi lives and works in Los Angeles, CA. His work is primarily autobiographically and follows his health and medical experiences, having a genetic disease Cystic Fibrosis, and being a recipient of a double lung transplant. In keeping consistent with his body-centered patient experiences, he uses his body heavily throughout his work, while stripping away privacy in attempts to bring out a more public dialogue about chronic illness and disability.

He uses materials he has a strong emotional and physical connection to- from hospital gowns, hospital rooms, IV antibiotics, and medical devices across content-dictated media, including painting, drawing, soft sculpture, video and performance.

Dominic received a BA in Sociology from Providence College and a MFA in Studio Arts from Cal State University, Los Angeles. He has exhibited work in Los Angeles, New York, Boston, Providence, Australia and Denmark. In 2018, he was a Keynote speaker at the Nexus Summit for interprofessional care and education at the University of Minnesota. He is a mentor for people on the lung transplant waiting list. He has given workshops and lectures at the UCLA Geffen School of Medicine, USC Keck School of Medicine, Chapman University, Cal State Los Angeles and Cal State Long Beach.
Nina Mathews, MFT
Nina Mathews, MFT

Nina Mathews is an immigrant from India who has worked as an Art Therapist for the Department of State Hospitals for the last 15 years. She currently supervises a multidisciplinary team of therapists to design creative, expressive arts rehabilitation interventions to assist in the rehabilitation of the severely mentally ill. She is a committee member of the annually held Multicultural Conference at the hospital which actively educates staff and other mental health professionals in the community on diversity and inclusivity. She has presented nationally and internationally on the efficacy of Art therapy and has taught as an adjunct professor of Psychopathology and Art therapy at Loyola Marymount University. She is a trainer and curriculum writer for the Trauma informed DSH State-wide TIC initiative committee and has been teaching a weekly Yoga class as a medical, physiological and psychological intervention for stress management and health maintenance. She is a published writer, poet and theatre director who has been on KPFK radio, college theatre and film. She is also a practicing visual artist who recently received a civic award for exhibiting at the Frida Kahlo ‘The dream is the truth’ show at the Buena Park Council chambers.

Daniel Leighton
Daniel Leighton

Daniel Leighton is an Augmented Reality artist, iPad painter, filmmaker, and technologist who creates art that delves into the deepest parts of the human psyche, while exploring the possibilities of technology and human emotion being harnessed for the greater good. Having Crohn’s Disease since birth, Leighton went through countless invasive procedures, hospitalizations and surgeries. The pain and suffering he experienced helped drive him to dive deep into a lifelong quest to understand the workings of his body and his emotions. These have become revered roadmaps as he creates his paintings, emotional portraits with simple lines and brilliant colors which capture complex states of the human psyche. Leighton adds Augmented Reality (AR) to his paintings by combining his backgrounds in filmmaking and computer programming. Using the Daniel Leighton Art + AR app,  Daniel’s AR-enhanced paintings come to life with animation, video, sound and interactivity. L.A. Weekly Arts Editor, Shana Nys Dambrot, says Daniel’s app, “turns your device into a viewing portal into what it is tempting to describe as a parallel universe.” Leighton graduated cum laude from UC Berkeley where he was a Regents and Chancellors Scholar. After graduating, Daniel worked for Internet pioneer c|net and co-founded a couple of other tech companies whose clients included Intel, Paramount Pictures and Sun Microsystems. Over the last decade, has been primarily focused on his art, presenting and exhibiting at the San Luis Obispo Museum of Art, Victoria and Albert Museum in London, the Apple Store, the LA Center for Digital Art, and the Pacific Film Archive, among many other venues. In addition, Daniel’s work has been featured by Timothy Potts, Director of the Getty Museum in Los Angeles, as well as, curators from MoCA and LACMA.

Visit Daniel’s website: https://www.danielleighton.com

Cory Hills
Cory Hills

Multi-percussionist, composer, and Grammy award-winning artist Cory Hills thrives on breaking down musical barriers through creative, interdisciplinary projects. He has received degrees from Northwestern University, Queensland Conservatorium, and the University of Kansas, and was awarded a research fellowship to Institute Fabrica. Currently, Hills is an active performer, composer, and recording artist in Los Angeles, as well as a member of the Grammy-nominated Los Angeles Percussion Quartet.

An advocate of new music, Hills has individually commissioned and premiered over 150 new works for percussion. He has given solo and chamber recitals across Europe, Australia, New Zealand, The United States, Mexico, and China. An advocate for percussion as an artistic discipline, Hills has been the artist-in-residence at Rocky Mountain National Park, Conservatorio de Las Rosas, a fellow at the OMI international artist’s colony, the first-ever artist-in-residence with Eighth Blackbird in Chicago, a recipient of a 2019 Bruce Geller Word Grant, and the inaugural resident for an arts in social practice fellowship through the National Endowment of the Arts and the state of Colorado.

Percussive Storytelling, a program that brings classical music and storytelling to kids in underserved communities, was launched by Hills in 2009. The program recently marked its 600th performance, and has reached more than 170,000 children in ten countries. Hills has released two award-winning albums (The Lost Bicycle and Drum Factory) and three children’s books (The Lost Bicycle, Beatrice and the POGs, and Beatrice and the Search for the Orb).

For more information, visit www.splatboombang.com.

Social Media Team

Sara Castle
Sara Castle

Sara Castle is an L.A. native and a current pre-med student majoring in Neuroscience. Sara has experience working with youth as a summer camp counselor and office administrator. She also assisted equine therapy organizations that help inner city children as well as disabled youth.

Madison Goon
Madison Goon

Madison is a recent graduate from the University of Michigan, Ann Arbor. She graduated from the school of kinesiology with a bachelor’s of science in Movement Science. During undergrad, Madison was a research assistant in two research labs which focused on the benefits of physical activity and yoga on pediatric development. She spent her free time volunteering at Ronald McDonald House, Evangelical Homes Michigan, and University of Michigan Hospital. Madison spent her summers working with children as a babysitter or summer camp counselor. In the future, she hopes to attend medical school and become a physician.

Marisa Holt, MFT
Marisa Holt, MFT

Marisa Holt is a chronic pain warrior! Marisa recently graduated from the USC Rossier School of Education with a masters degree in marriage and family therapy and also has a B.A. in psychology from Cal State, Long Beach. She has practiced therapy in South Los Angeles with Counseling Partners of Los Angeles at a school site in addition to practicing at Allies for Every Child with children, adults, and families. She has experience working with clients ages 2+ who have severe trauma, substance abuse, domestic violence, foster families/family preservation, and different cognitive/ behavioral needs. Marisa also has a passion for working in the classroom, and has worked as an educational assistant at Pressman Academy; an ECC-8th grade school for 4 years. Marisa also went to pastry school and has a certification in pastry art. She loves to bake for others and with others. Marisa has gotten the chance to bake in addition to sharing other alternative healing methods with clients and students such as meditation, drawing, exercise, and music. In the future, Marisa wants to use her MFT degree to work with children and teens with chronic pain and to hopefully help them hold space in their lives for both pain and joy, and to build resiliency.

Resource Team

Laura Cavanagh
Laura CavanaghLead Research Assistant

Laura Cavanagh is a senior at Mills College, working towards a Bachelor’s of Science in Biopsychology. She is a Girl Scout Gold Award recipient, and, for her project, she handmade eighteen blankets for a residential mental health treatment program and taught over fifty young girls knitting and stress-coping skills. As part of her undergraduate studies, she has been involved in neurobiology and genetics research, including presenting a poster at the Bay Area Worm Meeting, a regional C. elegans research conference.  Laura has a strong interest in mental health and volunteers as a trained crisis counselor at Crisis Text Line. She worked at Assistance League of Flintridge’s summer school for two years, as she loves working with children. In her spare time, Laura is an avid knitter and crocheter, and finds healing in this calming work. She hopes to attend medical school, and specialize in a field that allows her to address the often unmet needs of children and caregivers affected by chronic pain.

Trozalla Smith
Trozalla Smith

Hello, my name is Trozalla Smith and here is a little bit about me. 13 years ago I woke up with this unrelenting pain that consumed my body. The pain stole everything from me, It left me bedridden unable to attend school or play with my friends. I fought for answers and fought for just one person to listen to my story, for just one person to help me. I finally got someone to listen and I became a patient in the pain program at Stanford and it changed my life. I still have daily pain, but now I get to walk with others through their journey. I get to help other children find hope and guide them through their healing. I get to fight for and with them. In the future, I intend on getting my MD/Ph.D. to become a physician-scientist so I can teach and practice medicine. Because I am a chronic pain warrior I have gained a lot of experience navigating through the health care system and am passionate about fighting against health care disparities. 

Maggie Fuzak
Maggie Fuzak

Maggie Fuzak is a senior at Simmons University in Boston, Massachusetts. She is working towards a Bachelor of Science in Psychology. She also is minoring in Public Health and Biostatistics. As a part of her undergraduate studies, she has been involved in gender non-binary stereotype research, symbolic racism research, and pediatric atopic dermatitis research. Maggie presented a poster at the Simmons University Undergraduate Symposium on the denial of the existence of racism and how it affects self and group hierarchies. Maggie was chosen to attend the Summer Institute for Biostatistics at the University of Colorado, Denver in 2019. Maggie has a strong interest in race and gender stereotypes, especially in the healthcare field. She has hopes to pursue a Master of Public Health concentrating in Epidemiology, and eventually hoping to get her PhD.

Maggie’s creative healing: playing sports, spending time with friends, going for runs, and listening to music.

Holly Scott-Gardner
Holly Scott-Gardner

Holly Scott-Gardner is a postgraduate student in the field of social and public policy at the University of Leeds. She holds a bachelor’s degree in Spanish from Coventry University, where she studied the use of CLIL (content language integrated learning) in schools within the Community of Madrid. She was a recipient of the 2020 Snowdon master’s scholarship and subsequently invited to join the Disabled Leaders Network. She co-founded Disabled Survivors Unite, a user led organisation which supports disabled survivors of abuse and sexual violence. In her capacity as a disability rights advocate she has spoken in Westminster and at the European Parliament, campaigning for better access to support services for disabled people.

Kayla Taft
Kayla Taft

Kayla Taft works as a behavior therapist for children on the autism spectrum, volunteers with UCI’s Patterson Lab studying psychiatry and human behavior, and is soon to begin a position as a clinical trial rater with Hoag Hospital in Newport Beach. She earned her B.A. in Psychology with cum laude honors from UC Santa Cruz and hopes to continue her education into graduate school. During her undergraduate studies, Kayla worked as a research assistant in Dr. Audun Dahl’s lab studying early childhood social interactions and socialization’s impact on development. In graduate school and beyond, Kayla hopes to conduct research investigating eating disorders, particularly the recovery period and ways to prevent relapse. In the world of chronic pain research, Kayla is interested in looking at the physical and mental intersection of these disorders, as this is something eating disorders and chronic pain disorders share. Outside of psychology, Kayla enjoys cooking, reading, and lifting weights!

Youth Advisory Board

Natalie Ben-Ari
Natalie Ben-Ari

Natalie Ben-Ari is currently in eighth grade. She is a Girl Scout of Los Angeles, and loves to do volunteer work within, and outside her Girl Scout troop. She is very involved in the choral arts and sings in 7/8 Honors Choir with her school. She also enjoys theater and where she is not only able to act, but is also able to sing. She has been playing the piano for many years and she attributes her love of singing to the piano. She fills roles of leadership at her school, including being president of California Junior Scholarship Federation at her school – a program that advocates for academic success, community service, and citizenship in schools all over California. She has suffered chronic pain, more specifically CRPS, since she turned ten, and wanted to help others who suffer chronic pain through CHYP. When she gets older, she aspires to be a doctor so she is able to give back to people and make an impact. She is on the CHYP Youth Advisory Board because she has first hand experience with chronic pain, and she hopes her input could be useful to benefitting the non-profit.

Luke Bryson
Luke Bryson

Luke Bryson is a student at Polytechnic School, where he manages homework, football, baseball, and social commitments. Luke is well versed in chronic pain having dealt with complex regional pain syndrome since childhood. Some of Luke’s favorite hobbies include writing, camping, playing sports, and researching conspiracy theories. He also enjoys creating works of art with many different mediums from film to painting to music.

Shelby King
Shelby King

Shelby is a 16-year-old teen who has been suffering from chronic pain for two and a half years. She has been to 25+ doctors and now has a great team headed up by Dr’s Zeltzer. She continues to improve every day. Her goal is to help and encourage other kids going through chronic pain situations. Shelby insists the last couple years have made her stronger and is determined for something good that will come out of the experience. With Shelby’s positive attitude the sky’s the limit!

Naomi Abergel
Naomi Abergel

My name is Naomi Abergel, I’m 18 years old and I’ve had chronic pain since I was 12. It took almost 3 years of me being in extreme pain daily until I was finally diagnosed with chronic pain and those 3 years were the hardest. My situation was constantly doubted by doctors, family, friends, and my school and it made me start to doubt myself. Maybe this was all in my head or me looking for attention… When I finally got to my pain specialist I was diagnosed with Fibromyalgia, IBS, Myofascial pain syndrome, Andenomyosis, and Chronic pain syndrome (just to name a few). I decided I wanted to spread more of an awareness about chronic pain and help others who are going through what I went through and make it easier. That’s what led me to chyp, as well as what helped me decide what career path I would like to go down. I’m currently on the road to starting school to become a Doctor and I am really excited about it. I’m honored to be a part of chyp because I know how helpful a support system could be. If there was something like this around when I started getting sick it would have made things so much easier and would have helped me feel less alone. That’s why I believe in chyp. I truly believe that it will help others and that’s one of my biggest goals in life: to take this negative thing that happened to me and turn it into a positive by helping others get through it.

Emily Ferraiolo
Emily Ferraiolo

At 13-years old, Emily is a dedicated student, a devoted friend, an amazing sister and daughter, and a hard-working, determined healer. She’s an eighth-grade student at Luther Burbank Middle School, who excels in science, social studies, art, and the culinary arts. She loves to listen to music, watch anime, and design new characters for stories she creates. Emily has amazing friends in her new home of California, as well as her hometown of Amesbury, Massachusetts. She is thoughtful, caring, and fun to be around. Her sidekick in life is her younger brother Matthew, who she has always watched over as a friend and big sister.

Emily is a survivor of Complex Regional Pain Syndrome (CRPS). She was diagnosed with CRPS in the 4thgrade, soon after making the move from Massachusetts to California. She was trying to adjust to a new life – a new town, a new school, making new friends – when she was diagnosed with CRPS. Emily had a lot of obstacles to overcome when she first became a patient of Whole Child LA. However, Emily’s perseverance and determination to heal were instrumental in her recovery. She endured home schooling, long painful car rides, and hours of therapy; but through that, she was able to develop incredible relationships with her doctors and therapists. After months of being in indescribable pain, she began her road to recovery through medication, psychotherapy, hypnotherapy, and physical therapy. Her journey continues, as she strives to help others in pain by sharing her story, and what she has learned.

Samantha Cohen
Samantha Cohen

Hi! My name is Samantha. I am 13 years old and in eighth grade. My main love is dancing, because it makes me feel like I can do anything and combines several things I love – listening to music, being active, and being creative. I have always loved playing sports, but when I was in fifth grade, I started having sudden, sharp pains in my knee that prevented me from doing anything active. The biggest issue was that none of the doctors I went to knew what was causing the pain, so they didn’t know how to help. We tried everything – many doctors and physical therapists, lots of medications – but nothing helped, and I ended up on crutches for several months, and eventually in a wheelchair for much of the year. Every day, I went to appointments but nothing worked. I had no time to see my friends, and when I did, it was very hard to see them able to do whatever they enjoyed, while I couldn’t do anything. I felt very alone, like no one knew what I was going through.

Finally, my parents found about Whole Child LA, where I was diagnosed with CRPS. Dr. Zeltzer ultimately helped me to walk again.  It was really hard work and very time-consuming, but I’ve never been happier. I am so grateful for the whole team because now I can not only walk, but I can dance every day with no pain. I have tried to help others like me by raising money for The Wheelchair Foundation to provide wheelchairs to children and young adults who can’t afford them all over the world. I am really honored to be on the Patient Advisory Board at CHYP, because those two years of my life were extremely difficult, and I wish I had someone at that time that had this in common with me to help me through it. I want people with chronic pain to know I am there for them, because the experience can make you feel very alone. I look forward to helping those struggling with chronic pain to make a difference in their lives. Also, I want to thank Dr. Zeltzer and her team from the bottom of my heart for helping me.

Dorian Simpson
Dorian Simpson

My name is Dorian Simpson. Born and raised in California. Born with Sickle Cell Anemia. I have been hospitalized multiple times each year with different complications with my illness. Attending school has been difficult because of hospitalizations, doctor’s appointments, and treatments. But through my struggles, God has allowed me to graduate high school May 2019. I am currently attending my first year of College which has started off a little difficult. My goals are to graduate college and to help find a cure for Sickle Cell.

Lucy Kleinberg
Lucy Kleinberg

Lucy Kleinberg is a 16-year-old honors student and Sophomore at Cleveland Humanities Magnet. When she isn’t on the tennis court or softball field, she can be found a Viridian Art Academy where she paints and volunteers in the youth classes. An avid fan of all ocean creatures, she spends most summers scuba diving at Sea Camp San Diego. Until she can study to be a vet, she lives at home with her parents, her twin brother, Sam, Wyatt (19), and her beloved dog, Honus. She credits the Dr. Zeltzer team for cracking the code to her chronic pain and hopes participating with other kids who have had difficulty with their wellness will start a trend toward healing others.

Sophia Dollenmayer
Sophia Dollenmayer

Sophia Dollenmayer is currently in 12 grade, and loves to perform. She travels around the country with Tremaine Dance Conventions, as well as competing within her home studio, Thrive Dance Center. She is extremely involved in her school, participating in student council, liturgy team and being the president of several clubs. She also loves volunteering within her own community through Shelter Hope and NCL, a mother-daughter organization. Sophia was diagnosed with Crohn’s Disease at the age of 10, and since the beginning of the year has suffered with chronic pain, specifically conversion disorder. Sophia hope to lend a helping hand to those suffering alongside her through CHYP. As she applies for colleges, she hopes to pursue a degree in Dance and Kinesiology, and eventually own her own dance studio. She is on the CHYP Youth Advisory Board because she has first hand experience with chronic pain, and hopes her input could be useful to benefitting the non-profit.

Caroline Cox
Caroline Cox

My name is Caroline Cox. I am 17 years old and a senior at Marlborough School. I have always been an athlete, and was going through the college recruiting process for volleyball when I started having pain near my stomach right before my Junior year. My pain has been an unrelentingly difficult and frustrating journey, but I have learned just how strong I am. Every doctor thinks they know the cause and can help, but when their ideas end up not working, they pass me on to the next. So far only the Zeltzers have really understood what I am going through. I have tried medicines, surgery, acupuncture, injections and just about everything else you can imagine to make my pain go away. I am honored to serve on the CHYP Advisory Board both to provide support to others and to learn more from my peers.

Lucy Yetman-Michaelson
Lucy Yetman-Michaelson

My name is Lucy Yetman-Michaelson. I am 19 years old and am currently a Junior at New York University studying Psychology, but I’m originally from Mid-City LA. I first was introduced to the UCLA pediatric pain clinic and to the concept of creative healing when I was 11 years old. I suffered from chronic headaches and fatigue on and off for most of my middle and high-school experience, but each year I grew more and more resilient. The pain and fatigue returned less and less as I worked with UCLA’s team to heal and grow into the person I am today. I am able to do things today I would never have thought possible for myself seven or eight years ago. I have taken on leadership roles at my university, including being a Resident Assistant for the Residential College on campus and a peer writing tutor for the Expository Writing Center. Last semester I studied away in Paris and traveled throughout Europe. And I have spent the last couple of years living, learning and exploring in New York City. I say all this because, though my journey with pain was long, difficult and immensely frustrating, I was able to overcome the hardships and learn a lot about myself in the process. There are still some days when I feel tired or have a headache, but I have learned so many strategies to deal with the fatigue and pain that these instances no longer define me. I wish I had known the future that was awaiting me when I was feeling my worst. I hope by sharing my experiences, both past, and present, I can show young people struggling with pain that while coping and healing with chronic pain is a process, there is always hope.

Téa Helfrich
Téa Helfrich

Téa Helfrich is a Child Development major at Whittier College where she works as an admissions ambassador. She manages chronic pain and hypermobility by walking, taking frequent breaks, and playing with dogs whenever she can find one. A passionate bullet journal keeper since early high school, she designed a pain tracking system that helped her see her own wellness cycles and self advocate with health care professionals. Téa has used hypnotherapy, aromatherapy, acupuncture, mindfulness, and support groups to help with some of the mental health challenges of living with pain. Learning to manage energy and schedule rest periods between classes and work has been the biggest challenge in the transition to living on campus and away from home. Téa’s other areas of interest include photography, musical theater, and hanging out with friends.

Maddie Cordoba
Maddie Cordoba

Maddie Cordoba is a photographer and director born and raised in Los Angeles. She graduated with a BFA in Photography and Imaging from NYU Tisch School of the Arts (’16) with additional focus on gender studies and mental health. She is half Argentine and an Aries. Maddie is passionate about helping herself and others overcome anxiety and depression in order to pursue their dreams.

Caregiver Advisory Board

Jill Endres, MD
Jill Endres, MD

Jill Endres is a retired minimally invasive surgeon living in Orange County. Most recently Professor of Clinical Surgery at the University of California, Irvine where she was the Director of Surgical Education, Dr. Endres devoted her career to educating medical students and residents. She is also the mother of a son with chronic pain. After receiving care at several major academic hospitals in the US and Holland, her son’s initial pain was cured although he continues to struggle with intermittent symptoms of Central Sensitization Syndrome and CRPS. Dr. Endres is committed to helping other families of children with chronic pain learn from her experiences.

Pam King
Pam King

Pam started her career in the fashion business. When she met her husband Ronnie she relocated from Los Angeles to Denver, Colorado. Both of them enjoyed the four seasons in the Mile High City. They started their family immediately and Pam focused on raising the kids while Ronnie traveled as a salesman. They have two sets of twins who are all born on the same day eight years apart. Now Alec is 25, Rebecca and Matt are 24, and Shelby and David are 16. About nine years ago Rebecca was recruited to a dancing and singing group called Kidz Bop. This eventually brought us back to Los Angeles. The kids were always musical and this move launched three of the King kids into the entertainment business. Pam managed the kids initially. They rented a home in Studio City that to their surprise had toxic mold throughout. They lived there for six years not knowing what was in the walls. Shelby was the first to get sick. From that point on Pam has been the liaison between doctors and Shelby. She has had to home school on and off for a couple years. Shelby continues to fight for her health on a daily basis with pain and chronic health symptoms. Pam has learned to be an activist for her children fighting for the answers to help Shelby live her best life.

Teryse Ferraiolo
Teryse Ferraiolo

 

Teryse Ferraiolo has had the opportunity to pursue her career goals and also stay at home to raise her children. She graduated with a B.S. in Finance from Boston College and a Masters in Secondary Education from Salem State. She taught high school math for 12 years in a small community in Northern Massachusetts, but believed her role was more than just teaching Mathematics. She understood the importance of connecting with the students: to inspire them, to give them confidence in their abilities, and to support them when they needed it.

Five years ago, Teryse and her family moved back to her home-state of California. She put her career on hold to help her family transition to their new home. However, the move was much more difficult than expected. In the first year of school, Teryse’sdaughter, Emily was diagnosed with Complex Regional Pain Syndrome. Teryse not only had to find the basics like a primary care doctor, but also had to educate herself about CRPS and find specialists that could help her daughter. She eventually discovered Whole Child LA, where Emily had a whole team of doctors to help her heal. They developed a plan which included medication, physical therapy, psychotherapy, and hypnotherapy. This combination of methodologies enabled Emily to not only heal from the physical pain, but also taught her strategies to heal from the emotional pain of leaving Massachusetts. She slowly developed the strength to start a new chapter in California, and is now a thriving teenager, who has made wonderful new friendships, has a passion for learning, loves to cook, and dreams of being an artist.

Teryse has played many roles during Emily’s illness. She was a caregiver when Emily was hurt, a teacher when she wasn’t able to attend school, and a mother to love, support, and guide her. Today, Teryse, along with her daughter, Emily, continue their journey as they pursue their desire to share what they have learned so as to help others.

 

Stephanie Cohen
Stephanie Cohen

Although my most rewarding job is my current role as full-time mother to three amazing children, I began my career in marketing research. I studied at the University of Pennsylvania, earning degrees in both psychology and economics/marketing. I worked in strategy consulting, and eventually moved into the field of health care marketing research for SmithKline Beecham and Amgen. I really enjoyed learning more about treating important diseases and conditions, and I most enjoyed helping bring to market new medications to help improve and extend people’s lives.

My youngest, Samantha, was always a very athletic girl involved in tennis and soccer – an extremely positive, engaging, and social child. Toward the end of fifth grade, she began experiencing knee pain, which continued to worsen over more than a year, until she needed a wheelchair, not able to put any weight on either leg. Over that time, we tried every type of doctor, physical therapy, and medication we could find, trying to figure out why her knee kept getting worse, instead of better, with more and more rest. Physicians came up with various diagnoses that explained her knee pain (bone lesion, Osgood-Schlatters), but there was no explanation for her continued deterioration. Eventually, we were referred to Whole Child LA, a pediatric pain center, where she was given a diagnosis of CRPS. Even though we had a correct diagnosis and a team of talented specialists providing targeted therapy, it still took almost six months for Samantha to finally get out of the wheelchair and start walking on her own. Now, Samantha only has occasional knee pain. She has switched from soccer to dance, and really enjoys the dance classes she takes every day after school. Her sense of humor and bright personality are back, and she is really enjoying eighth grade, fully involved with all activities.

The worst part of the whole experience was watching Samantha suffer, and feeling so helpless and isolated in trying to help her. Her physical pain was difficult to witness, but also the emotional and social toll it took on her, right when she was adjusting to her first year in middle school. There was also a major impact on our whole family dynamic, as other siblings were impacted by the profound change in our family and all of the time spent trying to heal Samantha. It is very important to me to help others experiencing what we went through. I want to be a part of making their experience a little better – through information and education and through creating a supportive community for the child and the caregivers.

Alexandra Helfrich
Alexandra Helfrich

Alexandra Helfrich’s passion is working on behalf of children. She’s served on the board of directors of the Burbank Arts for All Foundation since 2007, and as co-chair of the organization from 2010-2013, where they’ve donated over $750,000 to arts programs in local schools. In addition, Alexandra has served as an advisor for public school Special Education, Arts, School Safety, and Mental Health and Wellness planning committees. A committed advocate, Alexandra was awarded the 28th Congressional District Woman of the Year recognition by Representative Adam Schiff in 2014.

As the mother of a child with frightening chronic pain and health challenges, Alexandra employed her advocacy skills to research resources, professionals, treatments, and support. The search included unconventional as well as traditional medical expertise to help her family manage multiple complicated conditions. After finally finding diagnoses, the greatest hurdle has been supporting the mental health of a previously active teenager whose body has betrayed her. Building a community that understands the needs of people faced with ongoing chronic pain became a critical priority.

Alexandra Helfrich is the Vice President of a family owned film production company. Her past professional experience includes Director of Feature Post Production for Fox Searchlight Pictures, and ten years of freelance independent and studio film production work in New York City. Alexandra is married to feature film editor and director, Mark Helfrich, and they have two powerful young adult daughters.

Debra Capers
Debra Capers

Ms. Capers is the mother of an amazingly resilient 26-year-old adult sickle cell warrior. She is also a recent cancer survivor. She has a 20-year career of public service with the County of Los Angeles. As a caregiver, she recognizes the importance of institutional policy change and the need for medical research that is patient-driven. As a result, she participates on adult and pediatric family advisory councils and a Pediatric to Adult Transition Workgroup at two hospitals in the greater Los Angeles area. Her interests include traveling, reading, and spending time with her daughter.