Tracey is the working mother of two grown children. Her daughter Courtney was diagnosed with neurofibromatosis at the age of three. Now twenty years later Courtney is thriving in all aspects of her life. Tracey will share her journey of how she raised a child who didn’t let NF stand in the way of her dreams, how she navigated the medical system, and how she coped with the emotional challenges of having a child with a genetic disorder.

Approximately 25-50% of patients with neurofibromatosis type 1 (NF1) will develop plexiform neurofibromas.  These benign tumours frequently cause significant clinical problems such as pain, disfigurement and weakness, and often are unable to be surgically removed because of their proximity to normal nerves and organs.  Many clinical trials of medications targeting these tumours have been attempted over the past 15 years. In this talk, I will review the recently published phase 1 trial of selumetinib, a MEK inhibitor, which showed promising results with shrinkage of a majority of tumors.  In addition, I will discuss the ongoing phase 2 trial of selumetinib at the NIH, which aims to prospectively evaluate the impact of tumour shrinkage on the clinical issues most concerning to patients.  

Dr. Andrea Gross is a board-certified pediatrician who earned her medical degree at the University of Connecticut and completed pediatric residency and a chief resident year at Cincinnati Children’s Hospital Medical Center.  She completed a pediatric hematology/oncology fellowship at Children’s National Medical Center and is currently a senior fellow working in the Pediatric Oncology Branch under the mentorship of Dr. Brigitte Widemann.  Dr. Gross has been the lead associate investigator on the phase 2 trial of selumetinib for patients with NF1 and inoperable plexiform neurofibromas since 2015.

Foto is the Past President and a founding member of the Tumour Foundation of BC (formerly known as the BC Neurofibromatosis Foundation). Foto is excited to share her challenges of living NF and how her ‘can do’ mindset didn’t let scoliosis or high blood pressure stop her from creating a full life she enjoys. Foto moved to BC after growing up on a grain and beef farm in Saskatchewan. She retired in 2014 after thirty years of service to the Canada Revenue Agency. She now shares her life with her soulmate John, and two cats Karma and Yogi.

“The shape, position, tension and tone of your spine is in relation to the shape, position, tension and tone of your life.” Dr Donald Epstein

The spine allows us to move and be upright while providing protection to the spinal cord. This relatively simple collection of bones connects our limbs and head, protects our organs, and houses the central highway of the nervous system that communicates within the systems of our bodies and the world around us. When we take steps to increase the function of our spine, we take steps to changing everything it connects to, the way it interprets the information, and how we interact with our lives.

Gregg was inspired to become a chiropractor with his first experience of Network Spinal chiropractic care in 2003. After completing his BA in Psychology at SFU in Vancouver, Canada, he completed his chiropractic degree at Macquarie University in Sydney, Australia. Three weeks after starting chiropractic school Gregg attended his first NS course and has been attending courses across Australia, Canada, and the USA ever since. Gregg has always loved that NSA works with facilitating the whole person, integrating all aspects of their life, and helps create lasting change, growth, and adaptability.

With an education background in kinesiology, business, and dance, Gregg brings a diverse set of experiences to practice. With an employment background from trades, to office work, and ski instruction, and passion for sport (especially skiing, surfing, and triathlons), Gregg also has a broad ability to relate to different people. Gregg is a member of the Network Spinal teaching staff and loves teaching chiropractors, chiropractic students, and the public alike.

Gregg lives in Vancouver, Canada with his wife and son and more information can be found at www.drsmillie.com

The patient with NF typically experiences a variety of medical interventions throughout their lifetime. Learning a simple meditation can help you prepare for your medical procedures with calm and ease. Meditation has been shown to alleviate distress, reduce anxiety, and increase confidence. Hiro will lead us through a meditation and answer your questions about this effective tool being used to help the body fight disease, prepare for medical procedures, and reduce side effects from treatments.

Hiroko is a Registered Clinical Counsellor. She is certified in neurofeedback and in EMDR. She is the owner of the Vancouver Brain Lab, a clinical practice dedicated to support individuals to heal, flourish and reach their potential. She is also the co-founder of Moment Meditation, a project aiming to inspire people to be calm, happy and focus by making meditation easy and accessible. She is the proud mom of Blanca, she loves good Italian fashion, design and gelato. 

Dr. Jan Friedman is a clinical geneticist and Professor of Medical Genetics at the University of British Columbia (UBC). He received his MD degree from Tulane University in New Orleans and his PhD in Genetics from the University of Washington (UW) in Seattle. He completed a pediatrics residency at the Children’s Memorial Hospital in Chicago and a clinical fellowship in medical genetics at UW.

Dr. Friedman has been involved in clinical and epidemiological research regarding neurofibromatosis for almost fourty years. His research has led to seminal advances in improving the diagnosis of NF, and in formulating recommendations for genetic and clinical diagnosis that have led to enhanced standards of patient care. His key research discoveries of novel molecular and cellular hallmarks that distinguish types of NF, benign tumours that typically arise in these patients, are providing new insights into the pathogenesis and progression of NF. Dr Friedman has published more than 275 peer-reviewed papers and has written six books and edited two others.

“Mindfulness” is becoming a household word, but how can you actually bring it into your life to feel more in control of stress, anxiety and depression? In this workshop, Shivani will break down the latest neuroscience research about two distinct mind-states in order to clarify what it means to be mindful, and to help you identify and break free from thought patterns that increase stress. You’ll be guided to stand, move gently, connect with your body, and engage simple, effective mindfulness and self-regulation practices that you can bring into your daily life.

Shivani Wells is a Certified Yoga Therapist in private practice since 2008, and specializes in trauma recovery, anxiety relief, and embodied resilience. She has conducted research on yoga for brain injury with the UBC Psychiatry department, and is currently engaged in graduate school in Counselling Psychology. In addition, Shivani teaches public yoga and meditation classes at YYoga and is on faculty with the Phoenix Rising Yoga Therapy school based in Massachusetts.

Isabel Jordan is one of the founding members and the current Chair of the Rare Disease Foundation. Fourteen years into parenting two children, one with a rare disease, has taught her many lessons – one of which is that partnering with health care providers and researchers can improve and inform both care and research.  Connecting with other parents and health care providers has made her a strong proponent of patient advocacy and family and patient led care.

This talk will present new strategies for coping with physical pain related to NF. The techniques are grounded in something called Acceptance and Commitment Therapy, which helps individuals use mindfulness and focus on their values so that their life is no longer controlled by their pain. 

Staci Martin, Ph.D., is a licensed psychologist in the Pediatric Oncology Branch (POB) of the National Cancer Institute (NCI), and the Clinical and Training Director of the Health Psychology and Neurobehavioral Research Program. Dr. Martin has extensive training in psychological assessments and clinical interventions with patients with medical illnesses ranging from infancy to adulthood. She has published numerous articles in peer-reviewed scientific journals and presented at national and international conferences on her research in health psychology. Currently, she is the Principal Investigator of studies examining the effectiveness of Acceptance and Commitment Therapy for adolescents and young adults with Neurofibromatosis Type 1 and chronic pain, and a mindfulness-based intervention for children with high grade brain tumors and their caregivers.

Further, she is the Past President of the Mid-Atlantic Chapter of the Association of Contextual Behavioral Science (ACBS). She serves on the boards of the ACBS Pain and Contextual Medicine committees, and she co-chairs the Pain Special Interest Group of the Society of Pediatric Psychology. She also is an associate editor of the Journal of Contextual Behavioral Science (JCBS).