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Among Dr. Kenechi Ejebe’s responsibilities at Wave is to serve as the clinical lead of the Neurology (CNS) programs which include Huntington’s disease, amyotrophic lateral sclerosis, and frontotemporal dementia. Dr. Ejebe has more than 10 years of translational and clinical research experience focused on developing innovative treatments for patients. Prior to joining Wave, he was a Resident Physician in Psychiatry at the Mount Sinai Hospital. Prior to that he was a member of the founding scientific team at Moderna Therapeutics. Dr. Ejebe received his undergraduate degree from Carleton College and medical degree from The George Washington School of Medicine. He completed training in adult psychiatry at Mount Sinai Hospital, with advanced research training in neuroscience at the Icahn School of Medicine.

Dr. Vicki Wheelock is a neurologist and the director of the HDSA Center of Excellence at UC Davis Health. The mission of the HD clinic at UC Davis is to provide expert and compassionate care to people and families affected by HD, to provide outreach and education to families and health care professionals, and to advance HD research. Dr. Wheelock has extensive experience in HD education and research, and has been an investigator for HD observational studies and clinical trials since 1997. Lisa Mooney is the licensed clinical social worker for the HDSA Center of Excellence, UC Davis, and Northern California HDSA Chapter. HD patients, family members, and community providers can call Lisa regarding HD resources, community resources and benefits, information and education, and long term care planning. 

Terry Tempkin, NP-C, MSN, is an Adult Nurse Practitioner who spent 18 years working with Huntington’s disease families at the University of California Davis Health System. During her time there, she worked with the HD team to build one of the largest HD programs in the country, noted for their expertise in HD/JHD care. She participated in over 18 clinical trials in Huntington’s disease.   Although she retired from the Health System in 2016, she did not retire from the passion to care for families coping with HD.

Please visit http://eurohuntington.org/ for more information.

For more information about KINECT-HD, please visit the HSG website at: https://huntingtonstudygroup.org/current-clinical-trials/kinect-hd/

https://www.rarediseaseday.org/ https://huntingtonsdiseasenews.com/2020/02/20/rare-disease-day-2020-recognized-around-the-world/ #whatmakesmerareHD

HDYO has a new Genetic Testing program! Please visit their website for more information: www.hdyo.org Matt Ellison's bio: "Hi! My role at HDYO includes developing all the educational project work we do for our website, including video projects, overseeing the youth camps and events HDYO hosts globally, planning future global projects to expand our reach, keeping the website up-to-date, responding to any messages we are sent for support/advice/questions and coordinating our volunteer translation team. I am the founder of HDYO and come from a HD family. I started working voluntarily on the idea of HDYO in 2010 and it launched in 2012, I have been a staff person since 2013. I also have a degree in Childhood and Youth Studies. I am fortunate to work on something that is a passion for me."

Gene Veritas Rerun 

Patty Romero-Mabry shares her HD experience as a caregiver for her husband and her son with JHD. For information on how you can help Patty and Bryan, please contact Lauren Holder at [email protected]

Melissa (Dilley) Ryant has been a member of the Huntington's Disease Society of America's (HDSA) National Youth Alliance (NYA) since attending her first convention in 2013. From that point, Melissa volunteered to serve on the NYA board for 6 years. Her mother had HD and was symptomatic her entire life, until she passed away in 2008. A few years later, Melissa tested gene negative at the age of 24. That led her to reaching out to the NE Ohio HDSA Chapter and since then she has continued to be heavily involved in the community by providing support to youth and parents affected by HD. She recently completed her first marathon by running for the HDSA team at the Chicago Marathon in October of 2019.

Melissa (Dilley) Ryant has been a member of the Huntington's Disease Society of America's (HDSA) National Youth Alliance (NYA) since attending her first convention in 2013. From that point, Melissa volunteered to serve on the NYA board for 6 years. Her mother had HD and was symptomatic her entire life, until she passed away in 2008. A few years later, Melissa tested gene negative at the age of 24. That led her to reaching out to the NE Ohio HDSA Chapter and since then she has continued to be heavily involved in the community by providing support to youth and parents affected by HD. She recently completed her first marathon by running for the HDSA team at the Chicago Marathon in October of 2019.

David Rubinsztein is Professor of Molecular Neurogenetics and a UK Dementia Research Institute Professor at the University of Cambridge. He is Deputy Director of the Cambridge Institute for Medical Research. Dr. Rubinsztein earned his MB ChB, BSc(Med)Hons, and PhD degrees from University of Cape Town. He came to Cambridge in 1993 as a Senior Registrar in genetic pathology and was the first person to complete formal training in this field in the UK. His research is focused in the field of autophagy, particularly in the context of neurodegenerative diseases. His laboratory pioneered the strategy of autophagy upregulation as a possible therapeutic approach in various neurodegenerative diseases, and has identified drugs and novel pathways that may be exploited for this objective. He has made contributions that reveal the relevance of autophagy defects as a disease mechanism and to the basic cell biology of this important catabolic process. Rubinsztein was elected Fellow of the Academy of Medical Sciences (2004),

Join us as Katie Jackson and Katrina Hamel give a recap of 2019

Coming Down From The Holiday Season - Rerun

Surviving the Holidays Rerun

Arthur Combs, MD is a physician executive and serial entrepreneur. After more than 20 years in clinical practice Art has spent the last 20 years bringing new medical technologies to market, as an officer of 5 successful start-up companies and a Fortune 500 senior executive. His focus has been on non-invasive technologies, although he has consulted across the life science spectrum from pharma to biotech, proteomics, molecular diagnostics and medical devices. Art is currently the CMO of MC10 Inc. an entrepreneurial company positioned to revolutionize clinical trials and chronic disease management through wearable technology. MC10’s technology is capable of gathering physiological and biometric data on ambulatory subjects in the home, and other non-clinical environments, as well as aiding researchers in the laboratory. The opportunities are many – longitudinal data from the home setting, transforming the clinical trials paradigm, chronic disease management, evolving subjective evaluations into objective assessme

Dr. Baranger is a Postdoctoral Scholar with Dr. Erika Forbes, at the University of Pittsburgh. He studies how risk factors for psychopathology - particularly early life stress and genetic risk - influence brain development. His work has so far focused on brain structure and reward processing, with an emphasis on better understanding the neurobiology of substance use and depression. He completed his PhD in Neuroscience at Washington University in St Louis, where he worked with Dr. Ryan Bogdan and Dr. Deanna Barch. His dissertation was on the use of neural biomarkers (i.e. reward reactivity and brain structure) to disentangle the causes and downstream consequences of alcohol use. In his postdoc he has been studying how early life trauma and environmental stress influence adolescent development of reward processing, and its relationship to depression.

Dr. Jim DeMesa is the Chief Executive Officer of Emerald Health Pharmaceuticals (“EHP”). Dr. DeMesa has 30 years of experience in biotechnology and pharmaceutical leadership, product development and clinical and regulatory management. He is a former practicing physician, CEO of two public biotech companies, and a board member of several biotech companies. Emerald Health Pharmaceuticals is a clinical-stage biotech company developing unique therapies that combine biotechnology with cannabinoid science to fight Huntington’s disease and other diseases. The company’s mission is to change the treatment paradigm for various diseases which currently have no cure by developing a new class of medicine at the cutting-edge of cannabinoid science, designed to be potentially disease-modifying rather than just for symptomatic treatment. Contact EHP:             [email protected]  Website:                      https://emeraldpharma.life Twitter:                        @Emerald__ Pharma Facebook:                  

Sonia Slevinski, MS, NCC, is a research manager and has been with the Peg Nopoulos Laboratory since 2008. Slevinski studied sociology and counseling psychology and is a National Certified Counselor (NCC). She worked in community and inpatient mental health services for ten years before joining the Nopoulos Lab as a research associate. She became the coordinator for the Kids-HD study in 2011, managing study administration, assessment and participant enrollment. Since 2013, Slevinski has served as lab manager while remaining heavily involved in the Kids-HD and Kids-JHD studies. 

Julie Stout is Professor in the School of Psychological Sciences at Monash University. She leads a team of post-docs, students, and IT specialists, employing techniques from neuropsychology and cognitive neuroscience to characterise the effects of neurodegeneration on cognition and brain function. Her research group is known for innovations in assessments using computerised and sensor-based approaches.   Professor Stout is a leading international expert in Huntington’s Disease. Her team has led the cognitive component of several large, international studies, which have described the cognitive, motor, psychiatric, and brain imaging changes in people with the Huntington’s Disease gene as they progress from normal functioning to manifest Huntington’s Disease. Professor Stout also led a 20-site international study that yielded the HD-CAB, which is now the standard cognitive assessment battery for clinical trials in Huntington’s Disease. Professor Stout also co-leads the Scientific Planning Committee of Enroll-H