We are back in person for our 2022 symposium!
October 29th | Inn at the Quay, New Westminster | 10am – 4pm PST
Our fall symposium will feature a variety of speakers including doctors, researchers, and patients sharing vital information on living your best life with neurofibromatosis. Guests will learn about the latest in NF medical advancements, drug developments and clinical trials in Canada, how to empower your child with NF, patient advocacy and more.
Your ticket includes:
- A hot buffet breakfast where you can meet other patients and families
- 12 highly informational and engaging guest speakers
- A delicious catered lunch
- Opportunity to ask questions of leading NF clinicians and researchers
Early bird tickets are $50 and are only available to October 7th. Regular price tickets $65.
8:30am - 4:00pm
|8:30 - 9:45am||Registration and Hot Breakfast|
|9:55||Welcome & Opening Remarks|
|10:00||A New Therapy under Development for Cutaneous Neurofibromas in Patients with NF1|
|William Hodder, Chief Executive Officer, NFlection Therapeutics|
|10:30||An Overview of How Drugs Come to Market in Canada|
|Marta Haniszewski, Market Access Manager, Alexion|
|11:00||Empowering Youth to Take Charge of their Health Care|
|Panel Presenters: Kaleigh Cornelison,MA, Alison Mi & Nitya Mahesh|
|11:45||Uncover Your Genetics by Participating in NF1 Research|
|Dr. Kavita Sarin & Ekshika Patel|
|1:00pm||Annual General Meeting|
|1:15||Your Mental Health Toolkit: Practical Strategies for Managing Anxiety|
|Rachel Day, Alfred Counselling Services|
|1:45||The Role of Multidisciplinary Neurofibromatosis Clinics|
|Dr. Suppiah, Neurosurgeon and Neurofibromatosis Researcher|
|2:30||Stretch and Nutrition Break|
|2:45||A Year in Review of the BC NF Clinic Pilot|
|Silvana Rangel RN,BSCN, & Stacey Strike|
|3:15||Transforming Pain into Perseverance- A Love Story|
|Jason Markulis Ellis|
|3:45||Wrap Up and Final Words|
Kaleigh Cornelison is currently the Manager of Quality Improvement, Resource Development, and Youth Engagement at the Adolescent Health Initiative (AHI). She obtained her master’s degree in social work from Washington University in St Louis with a specialization in nonprofit management and her bachelor’s degree in communication studies from the University of Michigan. Prior to working at AHI, she worked in St Louis and Los Angeles in youth-serving nonprofits, schools, and health care. She also enjoys developing and delivering engaging professional development opportunities for adult learners. Kaleigh is passionate about supporting young people by empowering the adults in their lives to meet them where they are.
Allison Mi is a senior at Huron High School in Ann Arbor, Michigan. She is very passionate about promoting the importance of adolescent well-being, especially when it comes to mental health. She loves TAC TAC because this organization gives her the ability to amplify the voice of her peers when it comes to important decision-making regarding their health. Also, it’s just an amazing group of people! When not working with TAC TAC, you can find Allison copy editing her school’s newspaper, playing in orchestra, practicing with the women’s golf team, working with the Michigan Medicine blogs, or helping out in clubs and organizations such as HOSA and Inno Education.
Nitya Mahesh is currently a senior at Salem High School and very excited to participate in the Tumor foundation symposium. She is passionate about raising awareness for various aspects of adolescent health care and has participated in various advocacy initiatives including lobbying to state legislators. Nitya is an active member of HOSA (Health Occupations Students of America) and National Honor Society and hopes to study Neuroscience in the future. Outside of school, she is an avid reader and loves to spend her free time drawing and sketching.
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.
Stanford University, in collaboration with Johns Hopkins University and the University of California San Francisco (UCSF) is conducting a large study to understand how an individual's genes affect their development of neurofibromas and other features of NF1. You will learn more about how you can get involved in the study.
Kavita Sarin, M.D./ Ph.D., is an Associate Professor of Dermatology. She received her undergraduate degree in Computer Science followed by her M.D. and Ph.D. in Genetics where she studied the role of telomerase in stem cell fate. She continued her residency training in Dermatology followed by a postdoctoral fellowship applying next generation sequencing to cutaneous neoplasms. Her research focuses on the genetics of skin cancer and inherited skin cancer risk.
Eshika Patel, Clinical Research Coordinator Associate,Stanford University School of Medicine – Department of Dermatology has been interested in the health sciences from a young age. She graduated from the University of California Santa Barbara with honors in 2019, and has a B.S in Biopsychology. While pursuing her undergraduate degree, she conducted research on the effects of stress on human decision making, as well as the conformational changes in a transmembrane protein affecting chemotaxis in bacteria. She has a background in clinical scribing, as well as project management and coordination.
How genetic testing and imaging play a role in improving health outcomes for patients with NF
Dr. Suppiah obtained his medical degree from Western University and completed his postgraduate training in neurosurgery the University of Toronto. During his residency, he earned a PhD through the University of Toronto’s Institute of Medical Science focusing on genomic and epigenomic investigation of neuronal tumors, in specific building expertise and advances in understanding the biology of Neurofibromas, Malignant Peripheral Nerve Sheath Tumors and genetic driven neuronal tumors. Dr. Suppiah is completing a fellowship in peripheral nerve surgery at the University of Calgary with Dr Raj Midha and the Neurosurgery Department.
Dr. Suppiah has broadly based surgical expertise in peripheral nerve surgery, spine surgery and neuro-oncology. Dr. Suppiah’s clinical focus will be treatment benign and malignant tumors associated with neurofibromatosis, including neurofibromas, schwannomas and malignant peripheral nerve sheath tumors. Dr. Suppiah’s academic focus will be further uncovering the molecular drivers of oncogenesis and malignant transformation of tumors associated with neurofibromatosis. He is the recipient of the prestigious Francis S. Collins Scholar in Neurofibromatosis Clinical and Translation Research, supporting his early career launch as a surgeon-scientist.
Silvana obtained her Bachelor of Science in Nursing in 2003. She has provided nursing care to patients in general surgical units, surgical and medical daycare, acute medicine, intravenous therapy, and pre-surgical screening departments. Silvana is humbled and grateful to be in a role of supporting, caring for, and empowering her patients. She regards her patients as ultimate experts in their own health and wellness and she strives to give her patients a voice in the health care environment. Silvana enjoys her role as patient educator and she enjoys learning from others and staying current in her nursing practice. In her personal time, Silvana enjoys walks in nature, time with her family, listening to audio-books, and volunteer work with children in summer day camps.
Stacey Strike was first diagnosed with NF1 at the age of 33. After her diagnosis she took it upon herself to research about NF and what it would mean for her health.
When she came across the Tumour Foundation she signed up to be one of the first patients in the virtual clinic. Stacey does her best not to let the NF hold her back. She enjoys running, hiking and exploring the beautiful mountains of BC.
Jason Markulis Ellis met the love of his life, Marilyne, in Québec City in 2011. Inseparable from the beginning, Marilyne and Jason were together for 10 years before an aggressive cancer took her from his world. Marilyne lived with neurofibromatosis type 1, but during their ten years together, it never surfaced as anything more than some cafe-au-lait spots.
Jason’s life was forever changed with the loss of his beloved Marilyne. To honour her memory Jason has made a life goal to share his knowledge of NF and MPNST with the NF community in the hopes it can help others lead to earlier diagnosis and higher levels of clinical suspicion. Jason is currently a student at the University of Guelph taking a course in Understanding Development and Global Inequalities. He continues enjoying their shared love of bike riding when he’s not working, and when the time is right will be honouring Marilyne with a significant ride.
Marta Haniszewski currently works as the Market Access Manager at Alexion, AstraZeneca Rare Disease, in Canada. As part of her role, Marta helps ensure that rare disease medicines are covered by insurers. Her role involves working to prepare evidence dossiers for public and private payers in Canada, and working with her broader team to address market access issues. Marta is a graduate of the Master of Biotechnology program at the University of Toronto Mississauga, and has worked in market access in the pharmaceutical industry for 4+ years. She loves problem solving, and finds her work of helping patients access their medicines in a timely manner highly rewarding. In her free time, Marta loves spending time outdoors, reading, and painting.
William Hodder is the Chief Executive Officer of NFlection Therapeutics. He has over 35 years of broad Pharmaceutical and Biotechnology industry experience including business development, operations, corporate and product marketing, sales, fundraising and product development. Mr. Hodder has a B.S. in biology from Oakland University and an M.B.A. from the University of Chicago Booth School of Business.
Rachel Day owns a private counselling practice located in St. Thomas, ON called Alfred Counselling Services. As a Registered Professional Counsellor and Certified Intuitive Eating Counselor, Rachel focuses on all things food including eating disorders, disordered eating and finding food freedom. Alongside this focus on eating disorders, Rachel supports clients who struggle with anxiety and depression, ensuring she provides clients practical and implementable tools to deal with these challenges. In her spare time, you can find Rachel at the stable spending time with her thoroughbred, Rosalie or walking her rambunctious Springer Spaniel, Arthur with her husband.
The Tumour Foundation of BC reserves the right to make changes to the agenda as required and without notice.
* A limited number of bursaries are available for individuals experiencing financial hardship.