Help 4 Hd Live!

Join us as Brandon shares his story about HD and the military

Cheney Drew is a research fellow and senior trials manager working in the Centre for Trials research at Cardiff University. She has a PhD in the neurobiology underpinning Huntington’s disease and now works as a clinical trials researcher, primarily focussing on trials concerning neurodegenerative disease, particularly HD. This includes trials of physical activity in HD and other complex interventions that may be used to modulate disease progression.

Debbie Pausig, LMFT, CT, is a Licensed Marriage and Family Therapist, a Certified Thanatologist, Professional Support Group Leader for HDSA CT-Chapter. Hospice Bereavement Coordinator for VNA Community Healthcare & Hospice. She is a National Speaker and Author of “An Affai? Worth Remembering With Huntington’s Disease, Incurable Love & Intimacy During an Incurable Illness.” She is the HDSA-CT Chapter Family Services Committee Chair and Education Committee Member. Debbie uses humor and compassion drawn from 25 years of experience in Law Enforcement and 17 years as her late husband with HD’s caregiver into her profession as a therapist and presenter. Contact info: · Debbie Pausig @203-985-8246, or [email protected], debbiepausigmft.com Support groups in North Haven and Norwich, CT LMFT · Mary Dunlevy @ 203-216-6266, [email protected] Support group in Fairfield,CT MSW *Hartford Healthcare Chase Family Movement Disorders Center, Vernon, CT and their Medical Director, Dr. de Marcai

Listen to Rachel Reimers share her journey with IVF-PGD

Dr. Bird is a clinical neurogeneticist with interests in a wide range of hereditary disorders of the nervous system. In 1974, Dr. Thomas Bird founded the first clinic for adults with neurogenetic diseases in the United States. For more than 40 years, he directed this clinic at the University of Washington where he saw thousands of patients and conducted pioneering research on conditions such as cerebellar ataxia, movement disorders, hereditary neuropathy, muscular dystrophies, and familial dementias. Over his career, he has been honored with numerous national awards and lauded for his discoveries about the genetics of hereditary neurological disorders including Alzheimer and Huntington diseases. Although retired from clinical practice, Dr. Bird still actively researches genetic diseases of the brain and neuromuscular system; collaborates with molecular biologists and others on genetics projects; and mentors physicians in training and research fellows. He earned his M.D. from Cornell Medical College and is boa

Join us as we talk to Kate Miner for HD Awareness Month.

Shana (Martin) Verstegen has many things to be proud of, but her work with the Huntington’s disease Society of America in honor of her mother will always top that list. Shana’s mother passed away from Huntington’s Disease in March of 2013. After growing up watching Debby Martin lose her ability to move independently, Shana strived to live every day to the fullest with a focus on movement – from being the first female pole vaulter at the University of Wisconsin, to winning 6 lumberjack world championship titles. Shana’s professional life involves traveling the country in the fitness industry as a Master Instructor for TRX Training and the American Council on Exercise, personal training, and teaching group exercise. Of course her heart is with fundraising and raising awareness toward finding a cure for Huntington’s Disease. She recently tested negative but will never give up the fight.

Join us as Sharon Thomason talks about her new book

Gene Veritas – whose real name is Kenneth P. Serbin – has been active in the Huntington’s disease community since his mother’s diagnosis with the disease in 1995. She died of HD in 2006 after a 20-year fight. Serbin tested positive for the HD gene in 1999. His daughter Bianca tested negative in the womb and is today a healthy 18-year-old college student. Since 1998, Serbin has served as a volunteer advocate for the Huntington’s Disease Society of America (HDSA). He adopted the pseudonym “Gene Veritas” in January 2005, when he started the blog “At Risk for Huntington’s Disease” (www.curehd.blogspot.com). He has posted 270 articles on numerous aspects of HD, its social impact, and the quest for treatments. In 2007, he helped initiate the effort in California to obtain funding for HD research from the state’s world-leading stem cell institute. In 2011, Serbin came out about his gene-positive status by keynoting the 6th annual HD Therapeutics Conference, sponsored by CHDI Foundation, Inc. That year he was also na

Phil’s Kids was set up in memory of Dr Phil, who sadly passed away from Huntington’s Disease (HD) in 2014. Whenever Dr Phil lost a patient he would immediately go and look at the new-born babies. He did this, he said, because it reminded him of the circle of life, of life continuing, of new hope and who knew what amazing feats these new humans might achieve. It was because of his belief in future generations, the possibilities of medical science and his great love of children that we decided to start Phil’s Kids. Stopping the passing of the gene is the only way to reduce the numbers of those with HD. Phil’s Kids aims to assist people to do just that. By offering financial support, information, advice and peer support for PGD-IVF we hope to be able to help the HD community to stop this horrendous disease in its tracks. The charity wants this generation within a family to be the last generation in that family to have HD, ever. 

Dr. Leslie Thompson talks about her research

Peg Nopoulos, M.D. is Professor of Psychiatry, Pediatrics and Neurology. She is the DEO and Chair of the Department of Psychiatry at the University of Iowa Hospitals in Iowa City, Iowa. Dr Nopoulos is a physician-scientist. Her clinical care consists of taking care of patients with Huntington’s Disease in Iowa’s HD Center of Excellence where she has worked for the past 15 years. Dr. Nopoulos’ research focuses on the study of brain and behavior. This is done using state of the art neuroimaging techniques, specifically Magnetic Resonance Imaging (MRI). Dr. Nopoulos is interested in aspects of understanding normal healthy brain such as differences in brain structure and function between the sexes as well as understanding how the brain changes with development through adolescence. In regard to HD, she is interested in studying the effects of the Huntington’s gene on brain development and is director of the Kids-HD and Kids-JHD program. The Kids-HD program evaluates brain structure and function in children at ris

John Paul Jr.’s driving career began in 1979 driving Formula Fords. The following year he joined his father’s racing team as co-driver in the IMSA series. After only two years of competing, John Paul Jr. started the 1982 season with back-to-back wins at Daytona and Sebring, and by the end of the season, he had clinched the championship at the age of 22, becoming IMSA’s youngest champion. He won the Michigan 500 CART race in 1983, followed by a second place finish at Le Mans in 1984. Additionally, John Paul Jr competed in the Indianapolis 500 seven times. To purchase his book, please visit http://johnmortonracing.net/5050-john-paul-jr

Tuhin Virmani received a combined M.D./Ph.D. at UT Southwestern Medical School in Dallas, Texas. His doctoral thesis explored the physiologic mechanisms of synaptic chemical neurotransmission. After neurology residency at Washington University in St. Louis, Missouri, he completed a clinical-research fellowship in movement disorders at Columbia University in New York. At Columbia he became interested in studying the causes of freezing of gait in Parkinson disease and he completed a clinicopathologic study under the mentorship of Drs. Stanley Fahn and Jean-Paul Vonsattel. Dr. Virmani has continued to focus his research on gait in neurodegenerative disorders since joining the University of Arkansas for Medical Sciences in 2013, where he is co-director of the Movement Disorders program. He runs a state-of-the-art Gait Lab with the goal of developing predictive algorithms for pre-symptomatic detection gait impairment that would allow development and testing of therapeutic options for patients with these debilitati

To view the original show page, please visit http://www.blogtalkradio.com/help4hd/2016/05/18/dr-nancy-wexler-on-help4hd-live "We are so honored and priviledged to have Dr. Nancy Wexler on Help4HD Live! The "Blond Angel" the "Gene Hunter" as she is so endeard by her subjects, has devoted her life and career as a Geneticist to finding a cure for Huntington's disease which took her mother and many other family members. Find her video interview on One on 1 Profile: Geneticist Dr. Nancy Wexler Leads the Fight Against one of the World's Most Dreaded Hereditary Diseases. Tune in for this momentous interview... Find more informaton about Dr. Nancy Wexler, President of the Hereditary Disease Foundation at http://hdfoundation.org/."

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."

Daniel Claassen, MD Lead Investigator at HSG’s Vanderbilt University Medical Center site and Director of the Huntington’s Disease Center of ExcellenceMember of the HSG Research Advisory BoardAssociate Professor of Neurology at Vanderbilt UniversityServes as Editor for the Huntington Study Group’s bi-annual journal, HD Insights Jody Core-Bloom, MD, PhD Lead Investigator at HSG’s UC-San Diego Health site and long-time member the HSG for over 20 years and member of the HSG Research Advisory BoardDirector of the UCSD Huntington’s Disease Clinical Research Program and Center of ExcellencePrinciple Investigator on over 40 clinical trials

Dr. Victor Sung, a native of Houston, TX, graduated from Vanderbilt University with a B.S. in Neuroscience and a minor in music in 2001. He received his medical degree from UT-Southwestern in Dallas in 2005. He completed residency training in neurology at the University of Alabama at Birmingham (UAB) in 2009, during which time he was elected to membership of the Alpha Omega Alpha Honor Society and received the Argus Award for Best Neurology Resident. He currently serves as Director of the UAB / HDSA Huntington's Disease Center of Excellence, serving more than 200 HD patients across the southeast.  The UAB COE was awarded the HDSA Excellence in Clinical Care Award in 2017.  Dr. Sung was awarded the President’s Award for Excellence in Teaching in 2018. Dr. Sung has been honored to serve on the HDSA Board of Trustees since 2017.

Dr. Higgins is the Vice President of Clinical Development at uniQure. He is responsible for the early development of clinical gene therapy trials for neurological disorders. Prior to joining uniQure in 2018, Dr. Higgins was responsible for all neurological diagnostic testing at Quest Diagnostics and was the federal CLIA-license holder for a specialty laboratory. He was formerly a Professor at Weill Cornell Medical College where he was the principal investigator on several private foundation and NIH research grants focused on clinical neurogenetics. He held senior leadership positions in genomic medicine at the federal and state governments including the National Institute of Health (NIH) and the New York State Department of Health (NYSDOH). At NIH he was part of the Human Genome Project and teams that initiated the first-in-human enzyme replacement and gene therapy clinical trials. He led the Human Genetic Initiative at the NYSDOH. He discovered the genes or loci for several diseases including Parkinson disea

Anne Rosser is Professor of Clinical Neuroscience at Cardiff University and Honorary Consultant Neurologist at the University Hospital of Wales. She trained in Medicine at Cambridge University where she also undertook her PhD in Neuroscience. She has worked in the area of neurodegeneration since 1994 and has a special interest in Huntington’s disease (HD), in particular the development of new therapies for this and related neurodegenerative conditions. She directs the Cardiff University Brain Repair Group; leads the South Wales HD clinical service; and co-directs the Wales Brain Repair and Intracranial Neurotherapeutics (BRAIN) Unit, which aims to deliver therapeutics into the brain in neurological conditions. She led the FP7 Consortium Repair-HD between 2013 and 2018, and is currently Chair of the European HD Network. Dr. Patrick Weydt is a board certified neurologist and certified neurogenetic counselor in the Department of Neurodegenerative Diseases and Gerontopsychiatry where he heads the Huntington’s Di