Help 4 Hd Live!

Re-run of our show with Kate Miner

As a psychologist with experience that spans clinical, educational, and professional settings, Dr. Marshall has been engaged in local and national suicide prevention and postvention work for more than 15 years. Since joining AFSP in 2014, Dr. Marshall has expanded AFSP’s menu of programs and improved program delivery through AFSP’s nationwide network of chapters. Dr. Marshall oversees AFSP’s Prevention and Education and Loss and Healing programs, which includes community-based suicide prevention training, clinician training, AFSP’s Healing Conversations Program for survivors of suicide loss, and programming for International Survivors of Suicide Loss Day. Dr. Marshall works to foster partnerships with mental health organizations, such as with the National Council for Behavioral Health to train people across the country in Mental Health First Aid, and oversees the development of new programming, including clinician trainings, community trainings and K-12 educator trainings. She is also past-chair for the Suici

Dr. Holmans is head of the Biostatistics and Bioinformatics Unit at the MRC Centre for Neuropsychiatric Genetics and Genomics at Cardiff University, and has over 25 years' experience in the statistical analysis of complex genetic traits, both in data analysis and developing novel genetic methodology. He has led the statistical analysis of large multicentre collaborations in genome-wide linkage of schizophrenia, and association in Alzheimer’s disease and schizophrenia. Of particular relevance to HD and other repeat disorders, he led the pathway analysis of the two GeM genetic modifiers GWAS (2015, 2019) and also the genetic analysis of HD progression (Hensman-Moss et al. 2017b), implicating DNA repair pathways as modifiers both of age at onset and progression in HD. He has also led the pathway analyses of HD RNA-seq expression data in myeloid cells (Miller et al. 2016) and whole blood (Hensman-Moss et al. 2017a), implicating immune pathways as relevant to HD pathogenesis and uncovering shared susceptibility pa

Norberta Robertson, aka “Birdie”, began her involvement with HNDC many years ago as an event volunteer. Her interest in Huntington’s disease quickly moved forward in 2012 when she joined the HD Clinic Medical Team as a volunteer Social Worker for the monthly HD clinic. In late 2014, she stepped into the research arena in a clinical trial as a Capacity Rater. Looking for a change out of mainstream case management duties, in May, 2015, Birdie joined the staff at HNDC as a full time Social Worker and research assistant. “Early on as a volunteer, I experienced that even small assistance to someone with HD brought about significant differences in the quality of life for that person, their caregiver and the family as a whole.” She is a Washburn University graduate, obtaining her Master’s degree in Social Work from Wichita State University. Her experience includes working with severe and persistent mental illness adults (SPMI), serious emotional disorders (SED), elder care, and substance abuse. In addition to her du

National Suicide Prevention Week: https://afsp.org/campaigns/national-suicide-prevention-week-2019/ Resources: https://afsp.org/find-support/resources/ Suicide Prevention Awareness Month: https://www.nami.org/get-involved/awareness-events/suicide-prevention-awareness-month

Debbi Fox-Davis has enjoyed a 23-year career leading and developing resources for nonprofits in North Carolina. Her career accomplishments include being the first Executive Director for Dress for Success of the Triangle; raising funding and engaging community supporters to ensure all children have permanent, safe and loving families for the Children’s Home Society of NC; raising scholarship and research funds for NC State University and running NC State’s Institute for Nonprofits online journal for nonprofit management. Debbi has also served as the Assistant Director for Development at Habitat for Humanity of Wake County and as the Director of Development and Marketing for the North Carolina Theatre. Debbi received her MBA from the Middlebury Institute of International Studies in Monterey, CA and has worked in Taiwan and studied in China. She received her Bachelors of Arts in History from George Mason University (Fairfax, VA). After growing up in the Washington, DC suburbs and moving around a lot for colle

Law Enforcement Education 2

Law Enforcement Education

Gwen has worked at the Good Samaritan Society’s University Specialty Center for the past 39 years. She is the nurse manager of the Huntington’s Unit. Gwen has been an advocate of HD for 23 years, helping residents and their families to navigate through issues surrounding long term care placement, supporting and educating staff on HD specialty care. Attends the HDYO North American camp as volunteer and is one of the camp nurse’s. Gwen also has served as a panel expert for the HDYO.org website. Has served on the board of HDSA Minnesota Chapter. Was a frequent speaker for Lundbeck Pharmaceutical doing webinars and on sight educations throughout the US about caring for people HD and Tetrabenazine. In the past has presented at the HDSA National conventions. In her spare time is interested in Reiki, Healing Touch, Aromatherapy and Feng Shui and yoga.

Seth Rotberg talks about his new organization, Our Odyssey.

John Alam is President and CEO of EIP Pharma. Until May 2014, he was therapeutic area head for diseases of aging within Sanofi R&D. In that role he led global R&D activities at Sanofi directed at Alzheimer’s disease and Parkinson’s disease, as well as number of other age-related diseases. Previously, from 1997 until 2008 he held positions of increasingly responsibility at Vertex Pharmaceuticals, including Chief Medical Officer and EVP, Medicines Development. At Vertex, he played major roles in the development of novel innovative medicines for HIV, Hepatitis C and Cystic Fibrosis. And, from 1991 to 1997, while at Biogen, Inc, he led the clinical development of Avonex (interferon beta-1a) for the treatment of multiple sclerosis. John is currently also on the board of directors for Alliance for Aging Research (Washington DC) and was previously on the Board of Trustees of Accelerated Cure Project for Multiple Sclerosis (Waltham MA). He is also currently on the advisory council of the Board of Overseers

Re-air of the UniQure show from February 2019

Update from Help 4 HD

Please join us as Ignacio talks about his organization Factor-H and how he is helping the HD community. https://factor-h.org/ To donate, please visit: https://help4hd.org/project-abrazos/ Also, for more information about "Dancing at the Vatican", please visit the following link

For more information about resources or contact information for Jennifer, please visit www.hdsa.org/epa

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 debbiepausig.mft@gmail.com, debbiepausigmft.com Support groups in North Haven and Norwich, CT LMFT · Mary Dunlevy @ 203-216-6266, mdunleavy@operationhopect.org 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