On December 2- 3, 2021 the Division of Cancer Predisposition at St. Jude Children's Research Hospital held its annual Family and Provider Conference on Cancer Predisposition, with this year’s conference focusing on Von Hippel Lindau (VHL) Syndrome. The conference provided ample opportunities for parents, children and other family members living with VHL, as well as providers who care for individuals with VHL, to learn the latest advances in VHL biology, tumor surveillance, and targeted cancer therapy. Many suggested approaches surrounding psychosocial and other health issues were also discussed. Twenty families and nearly 250 individuals registered for the conference, representing 36 states and 23 countries! If you were unable to attend, here you will find speaker information, recordings of several presentations, and other valuable resources.
- This conference helped me understand some of the newer developments in treatment of VHL.
- There was a tremendous amount of useful information. It struck hopefulness, support, and community for our family. It encouraged conversations with our family and brought awareness to the psychosocial aspect my children and myself are dealing with. VHL is so rare and unheard of that doctors classify you as a horse when there is a zebra sitting right in front of them. I would love to flood the medical community with all the information from this conference. People deserve access to the medical care they need. Thank you for taking the time to put the conference together and for raising more awareness to VHL.
- It is great to listen and hear about our community of VHL patients. Often it feels like we are the only ones out here dealing with these issues.
- I loved the expertise and variety of perspectives; having other experts from outside the St. Jude community share was great. I was extremely impressed with the entire program.
- I enjoyed hearing from families and other that have lived with VHL
- The organization of the sessions and the dedicated time for questions at the end of sessions created space for engaging with the audience and created a buffer for the next presenter, which seemed to help keep everything running on time. Also, the presenters were so knowledgeable and passionate!
Mindfulness apps suggested by Dr. Niki Jurbergs
- Breathe, Think, Do with Sesame
- “Calm Kids” Section of Calm App
- Headspace (Kid-friendly option; 3 different age groups available)
- Smiling Mind App (variety of age-group options available)
- Mindfulness for Children App
- Virtual Hope Box (contains simple tools to help patients with coping, relaxation, distraction, and positive thinking)
- Daniel Tiger’s Grr-ific Feelings ($2.99)
- HelloMind (Free with in-app purchases)
Apps for Adolescents and Young Adults
- Virtual Hope Box (contains simple tools to help patients with coping, relaxation, distraction, and positive thinking)
- Headspace App (Mindfulness)
- Calm App
- Smiling Mind App
- What’s Up App (CBT and ACT based)
- Mindfulness Coach App
- CBT Thought Record Diary App
- Happify App
- CBT-i Coach
- MoodMission App (help with learning and implementing coping skills)
- notOK App (Suicide Prevention)
- Features a large, red button that can be activated to let close friends, family and their support network know help is needed. Users can add up to five trusted contacts as part of their support group so when they hit the digital panic button, a message along with their current GPS location is sent to their contacts. The message reads: “Hey, I’m not OK! Please call, text, or come find me.”
- Anger and Irritability Management Skills (AIMS)
- Mood Kit App ($4.99)
- Has a journal component and different “mood improvement activities”
- Parenting2Go App
- Coloring App
- Recolor App (for iPhones but there are many similar ones)
- Games for Distraction
- Breath of Light: Relaxing Puzzler ($1.99)
Dr. Nichols is the Director of the Division of Cancer Predisposition at St. Jude Children's Research Hospital. As a pediatric oncologist, her research interests are in the molecular mechanisms that provide protection against viral infections and cancer. Her overarching goals are to understand how defects in these mechanisms contribute to disease and use this information to develop more effective treatments for children with increased genetic risk for infection and/or malignancy.
Towards this end, Dr. Nichols' research focuses on identifying novel genetic causes of childhood cancer, optimizing methods of tumor surveillance for children with increased cancer risk, evaluating the factors that influence parent and adolescent decision making and communication around genetic testing for heritable cancer risk, understanding the behavioral and psychological impacts of cancer genetic testing on children and their families, and increasing understanding and developing new therapies for malignant and non-malignant hematologic disorders, including B-cell leukemias and lymphomas, hemophagocytic lymphohistiocytosis and Epstein-Barr virus-associated lymphoproliferations.
Ramaprasad Srinivasan, MD, PhD
Ramaprasad Srinivasan obtained his MD from the Bangalore Medical College in India and then completed his PhD in biomedical sciences at the University of Texas MD Anderson Cancer Center in Houston. He came to the NCI in 1999 after completing his internal medicine residency training at the University of Texas Health Science Center-Houston, to pursue a fellowship in medical oncology/hematology. After completing his fellowship, Dr. Srinivasan joined the Urologic Oncology Branch as a Staff Clinician. He is currently an Investigator and Head of the Molecular Cancer Section, Urologic Oncology Branch. Dr. Srinivasan is developing treatment strategies and clinical trials for patients with both hereditary and non-hereditary forms of kidney cancer. He is investigating a variety of newer 'targeted' agents as well as novel immunotherapy approaches, in clear cell and papillary kidney cancer, as well as hereditary kidney cancer syndromes such as von Hippel-Lindau, hereditary leiomyomatosis and renal cell cancer (HLRCC) and hereditary papillary renal cell cancer (HPRC).
Russell R. Lonser, MD
Russell R. Lonser, MD, is Professor and Chair of the Department of Neurological Surgery at The Ohio State University Wexner Medical Center. He holds the Dardinger Family Chair in Neurosurgical Oncology. Previously, he was Chief of the Surgical Neurology Branch at the National Institutes of Health. He specializes in the resection of brain and spinal cord tumors.
His research includes nervous system drug delivery, gene therapy and tumor biology. He has authored more than 300 publications and given over 300 national/international talks. He received the Tumor Young Investigator Award and the Mahaley Clinical Research Award from the American Association of Neurological Surgeons (AANS)/Congress of Neurological Surgeons (CNS) Tumor Section. He was the AANS/CNS Tumor Section Bittner Lecturer and the American Academy of Neurological Surgery Edward H. Oldfield Lecturer.
He has served as Treasurer and President of the CNS. He is a Director on the American Board of Neurological Surgeons and was the Head of the Research Subcommittee for Head, Neck and Spine Injury Committee for the National Football League. He has mentored over 40 fellows. He has served on the Editorial Boards of NEUROSURGERY, World Neurosurgery, Journal of Neurosurgery (Co-Chairman of Board), PLoS One and Science Reports. He is Consulting Editor for Neurosurgery Clinics of North America and has edited 3 neurosurgical textbooks.
Benjamin King, MD
Dr. King specializes in ocular oncology and vitreoretinal surgery. He graduated medical school and residency in Ophthalmology at the University of Tennessee Health Sciences Center. He subsequently completed fellowship in Ophthalmic Oncology at St. Jude Children’s Research Hospital followed by fellowship in Vitreoretinal Surgery at the University of Iowa
Katy Beckermann, MD, PhD
Dr. Beckermann is an assistant professor of medicine at Vanderbilt University Medical Center where she serves as a clinical researcher focused on kidney cancer and inspired by the dramatic responses with immunotherapy agents targeting T cells to harvest the power of the immune system and fight cancer. She works as part of a multi-disciplinary team for genetically inherited syndromes associated with kidney cancer and specifically sees patients with VHL, Birt-Hogg-Dube syndrome (BHD), and hereditary leiomyomatosis and renal cell cancer (HLRCC).
Rodolfo Perini, MD
Rodolfo Perini, MD, is an Associate Vice President of Clinical Research and leads the Renal Cell Carcinoma (RCC) Sub-Section at Merck. After completing his medical degree In Brazil, Rodolfo moved to the U.S., where he completed his internal medicine residency at the University of Miami/Jackson Memorial Hospital. He then pursued further training in Nuclear Medicine and Medical Oncology at the University of Pennsylvania. Rodolfo held a dual appointment in Medicine and Radiology from 2010 to 2013. Rodolfo joined Merck in 2013 and has developed phase 1-3 trials of pembrolizumab After successful approvals of pembrolizumab in urothelial cancer, he transitioned to lead and build a broad RCC program. Most recently, he led the approval of belzutifan, the first-in-class HIF2alpha inhibitor. Rodolfo lives in Wynnewood, Pennsylvania with his family. He is an avid soccer fan (following Brazil and US national teams) and has more recently acquired a taste for American Football (Philadelphia Eagles).
Katianne Howard Sharp, PhD, is an Instructor in the Department of Psychology at St. Jude Children’s Research Hospital. She completed her doctorate in Clinical Psychology with a focus on children and families at The University of Memphis. She completed clinical internship at The University of Mississippi Medical Center Consortium and a research fellowship in pediatric psychology at Nationwide Children’s Hospital. Dr. Sharp joined the Department of Psychology at St. Jude in 2018 as a Clinician-Scientist, with research and clinical interests in cancer predisposition. Her research is focused on parent and child adjustment and communication in the context of cancer predisposition disclosed during childhood.
Dr. Niki Jurbergs is a pediatric psychologist who serves as Director of St. Jude Children’s Research Hospital’s Psychology Clinic. She came to St. Jude in 2005 to complete her postdoctoral fellowship and feels very fortunate to have joined the clinical staff as an attending psychologist in 2007.
The Psychology Clinic at St. Jude works with patients and families to promote positive coping and resilience in the face of life-threatening illness. Niki and her fellow psychologists help children with a wide variety of challenges such as sleep issues, behavior issues, medicine avoidance, pill-swallowing problems, pain, and other distress. The St. Jude psychologists work with patients and their families on learning problem-solving skills and other strategies to use during treatment and in everyday life.
Niki, who specializes in working with children with brain tumors, has in depth knowledge on how to have conversations with kids who have life-threatening conditions, and she regularly advises parents on how to best support their children.
Niki earned her BA in Psychology from the University of Tennessee at Knoxville and her PhD in Clinical Psychology from Louisiana State University. She completed her predoctoral internship at the University of Miami’s Leonard Miller School of Medicine
Anthony Daniels, MD, MSc
Anthony Daniels, MD, MSc, is chief of the Division of Ocular Oncology and Pathology and director of the Ocular Oncology Fellowship Program in the Department of Ophthalmology, Vanderbilt Eye Institute and Vanderbilt-Ingram Cancer Center. An assistant professor of Ophthalmology and Visual Sciences, and Radiation Oncology, he joined the Vanderbilt faculty in 2013. He graduated summa cum laude from Princeton University and subsequently received a Master’s degree in public health policy from the London School of Economics. After attending the University of Pennsylvania School of Medicine on a full scholarship, Dr. Daniels completed an internship at the Memorial Sloan-Kettering Cancer Center, and then both his ophthalmology residency as well as a vitreoretinal surgery fellowship at the Massachusetts Eye and Ear Infirmary at Harvard Medical School. He subsequently did additional training in the management of ocular tumors at Memorial Sloan-Kettering Cancer Center and at the Mayo Clinic.
Dr. Daniels specializes in ocular tumors in adults and children, including melanoma, retinoblastoma, hemangiomas, ocular metastases, lymphoma and ocular surface tumors. Funded by the NIH, by foundations and by industry, he has been nationally recognized for his research, which focuses on drug discovery and animal models for eye cancers. He has authored 3 editions of the most popular ophthalmology board review book on the market, as well as numerous book chapters and several dozen peer reviewed publications. Dr. Daniels has received more than a dozen research awards, including the Ronald G. Michels Award, the Ronald Margherio Research Award from the Retina Society, and a prestigious Career Development Award from the Research to Prevent Blindness Foundation. He is the former president of the Nashville Academy of Ophthalmology, a member of the prestigious Macula Society and Retina Society, and he was selected as one of the nation’s “Emerging Vision Scientists” by the Association for Eye and Vision Research to present to Congress. He is a member of the Clinical Advisory Council of the VHL Alliance, a Medical Advisory Board member of the Rally Foundation for Pediatric Cancer, a member of the Canadian Retinoblastoma Research Advisory Board, and he recently chaired the International VHL Surveillance Guidelines Consortium.
Michaela Shurden, BS
Michaela Shurden, BS earned her Bachelor of Arts degree in Elementary Education from the University of Mississippi. This is her 22nd year in the education field. Michaela is licensed in elementary education (K-8) and taught in Jackson Public Schools and Madison County Schools prior to coming to St. Jude Children’s Research Hospital. Michaela has been a member of the St. Jude School Program for nearly 16 years and is currently a K-5th grade teacher. Her current role allows her to work with patients’ community schools and their curriculums to help patients continue with their learning during treatment. Each year Michaela helps organize the Kindergarten Graduation Ceremony, plan summer activities, and coordinates enrichment groups for School Program students utilizing St. Jude volunteers.
Chair of the Board, VHL Alliance
Camron King is Chair of the Board for the VHL Alliance. He is driven to impact positive change and work towards the Alliance mission of “Curing cancer through VHL” as he is both a patient and parent of children with the condition.
Professionally, he is President and Founder of Oakwood Strategic LLC and President of the Association Resource Center, both based in California. Recognized for his dynamic leadership, effective management and forward-thinking approach to brand building and management, Camron has been fortunate to have built a successful career in luxury value-added agriculture and association and non-profit management.
His experiences are diverse ranging from marketing, public relations, management to government affairs. He is a regularly invited presenter at conferences and events around the world.
Camron attended Cal Poly, San Luis Obispo studying Environmental Horticultural Sciences; California State University, Sacramento studying Government and then graduate studies in Public Policy and Administration.
Camron, his wife Alicia and their two children – Brayden and Addison - live just outside of Sacramento, California.
Dr. Holly Spraker-Perlman is a pediatric palliative oncologist and integrative medicine physician at St. Jude Children’s Research Hospital (SJCRH). She completed her undergraduate degree in Biology at the College of William & Mary (Williamsburg), and attended medical school at the Virginia Commonwealth University/Medical College of Virginia (Richmond). She subsequently completed a residency in Pediatrics at Emory University in Atlanta, Georgia before accepting a fellowship position in Pediatric Hematology-Oncology at SJCRH. She finished fellowships in both Pediatric Hematology-Oncology and Hospice & Palliative Medicine, and a Masters in Epidemiology (University of Tennessee Health Science Center) before leaving Memphis, TN for Salt Lake City, UT. She was an assistant professor at the University of Utah in Salt Lake City, UT, in the Division of Pediatric Hematology-Oncology from 2010-2017. There, she performed clinical care of pediatric oncology patients, with a focus in pediatric sarcoma and rare tumors, but also was the Pediatric Hospice Medical Director for Intermountain Homecare and Hospice. During this time, she completed a fellowship in Integrative Medicine through the Academy of Integrative Health & Medicine (in combination with Oregon Health & Science University). She returned to the faculty at SJCRH in September 2017 as a member of the Department of Oncology, Division of Quality of Life & Palliative Care. She started the Integrative Medicine program at SJCRH in 2020 and provides clinical care as both an integrative medicine and palliative care physician through the Quality of Life for All (QOLA) service. She is also certified in infant and pediatric massage and acupuncture.
From a research standpoint, Dr. Perlman is interested in the use of integrative therapies and childhood cancer and blood disorder care for symptom management, improved quality of life, and wellness. She has special interest in integrative medicine program development, acupuncture in the care of pediatric hematology-oncology patients, and shared decision making surrounding complementary therapies.
Elysa Bond, MS, CGC
Elysa Bond is a certified genetic counselor at Rush University Medical Center in Chicago, IL, specializing in cancer genetics. She received her master’s degree in Genetic Counseling from the University of Michigan, where her thesis research focused on the impact of von Hippel-Lindau disease on the lives of young adults.
Samantha Greenberg MS, CGC
Samantha Greenberg is a genetic counselor at Huntsman Cancer Institute. She received her Masters' of Genetic Counseling and Public Health from the University of Michigan after teaching seventh grade science in Tulsa, Oklahoma. Samantha helped develop the von Hippel-Lindau (VHL) Care Center at Huntsman Cancer Institute (HCI). She now oversees the Paraganglioma clinic and high-risk prostate clinic at HCI alongside a multidisciplinary team. Her research and interests center around VHL, prostate cancer, paraganglioma/pheochromocytoma, and education, where she serves as a faculty member with the University of Utah Genetic Counseling Program.
Time Event 9:00-9:15 a.m. Welcome, Conference Information and introductions – Dr. Kim Nichols 9:15 – 9:45 am Recent Advances in the Management of von Hippel Lindau Disease – Ramaprasad Srinivasan MD, PhD 9:45 –10:00 am Questions for Dr. Srinivasan 10:00 – 10:30 am Neurologic Manifestation of von Hippel-Lindau Disease – Russell Lonser MD
10:30 – 10:45 am Questions for Dr. Lonser 10:45 – 11:00 am Break 11:00 – 11:30 am Diagnosis and Management of Intraocular Tumors Associated with von Hippel Lindau Syndrome – Benjamin King MD 11:30 – 11:45 am Questions for Dr. King 11:45 - 12:15 pm VHL and RCC: biology, diagnosis, and treatment – Katy Beckermann, MD, PhD 12:15 – 12:30 pm Question for Dr. Beckermann 12:30 – 1:30 pm Lunch Break 1:30 – 2:00 pm Development of Belzutifan, A First-in-Class HIF-2 Alpha Inhibitor – Rodolfo Perini, MD 2:00 – 2:15 pm Questions for Dr. Perini 2:15 – 2:30 pm Break 2:30 – 3:00 pm Breaking the Ice: Talking about VHL with your Children – Katianne Howard Sharp PhD 3:00 – 3:15 pm Questions for Dr. Sharp 3:15 – 3:45 pm Supporting Your Child’s Psychosocial Needs in the Context of VHL – Niki Jurbergs PhD 3:45 – 4:00 pm Questions for Dr. Jurbergs 4:00 – 4:45 pm Interactive Session
Parent Round Table Discussion: The Impact of VHL on Children and Families – Katianne Sharp PhD
(This session is an opportunity for patients, families, and caregivers to discuss difficulties in parent-child communication when talking about VHL. We welcome you to share your questions and thoughts in the chat section.)
4:45 - 5:00 pm Conference Day 1 Closing Remarks – Dr. Kim Nichols
Time Event 9:00–9:15 am Welcome, Conference Information and introductions – Dr. Kim Nichols 9:15– 9:45 am New Multisystem Guidelines for Surveillance of Patients with VHL Disease – Anthony Daniels MD 9:45 – 10:00 am Questions for Dr. Daniels 10:00–10:30 am Tips for navigating school for kids with VHL – Michaela Shurden, BS 10:30 – 10:45 am Questions for Mrs. Shurden 10:45 – 11:00 am Break 11:00 – 11:30 am The VHL Alliance – Working for a Stronger VHL Community – Camron King 11:30 – 11:45 pm Questions for Mr. King 11:45 – 1:00 pm Lunch break 1:00 – 2:00 pm Interactive Session
Integrative Health Approaches for von Hippel Lindau Patients and Families – Holly Spraker-Perlman MD, MS
(This session is an opportunity for patients, families, and caregivers to ask questions about integrative health therapies and resources. We welcome you to type your questions in the chat session and one of our experts will help to answer your question.)
2:00 – 2:15 pm Break 2:15 – 2:45 pm Dating with VHL: When do you share? – Elysa Bond MS, CGC 2:45 – 3:00 pm Question for Ms. Bond 3:00 – 3:30 pm Supporting the Transition to Adulthood in Adolescents/Young Adults with VHL – Samantha Greenburg MS, MPH, CGC 3:30 – 3:45 pm Questions for Ms. Greenberg 3:45 – 4:00 pm Break 4:00 – 4:30 pm Roundtable with the Mayfield Family
(This session is an opportunity to hear the Mayfield families VHL journey. We welcome you to share your questions and thoughts in the chat section.)
4:30 – 4:55 pm Time to answer any remaining questions from the audience 4:55 – 5:00 pm Closing remarks – Dr. Kim Nichols
St. Jude Children's Research Hospital is accredited by the Accreditation Council for Continuing Medical Education (ACCME) to provide continuing medical education for physicians.
St. Jude Children’s Research Hospital designated this live activity for a maximum of 10.5 AMA PRA Category 1 Credits™.