Help 4 Hd Live!

For more information, please visit join-hd.org

Please visit www.championsforhd.org/donate or http://www.ringwarscarolina.net/

Louanne's bio:  I stood at the foot of my husband's hospital bed... "Where is the book?" I asked the doctor. "What book?" he asked... "The book that tells me how to do this..." I was 33 years old and my 35 year old husband lay in the bed, just pronounced brain dead. It was the most devastating loss I had experienced in my life. Through this unexpected blow in life, I learned many lessons that I did not want to learn, but I did learn something profound. I wanted to help other people through the horribleness of grief. After doing much research on what type of certification I wanted to get in order to help people, I discovered the Grief Recovery Method website. I signed up for their certification program and became a Grief Recovery Specialist in 2016. The Grief Recovery Method is a practical, action based program that fit my beliefs and lifestyle. I have now helped over 150 people walk through the small and correct actions that allow people to come from pain to relief. I have heard over and over again how muc

Katie Jackson and I talk about the recent research announcements.

https://www.youtube.com/watch?v=1ytFB8TrkTo

FDA Listening Session Breakdown with Danielle

We talk about Roe vs Wade being overturned and how that can affect the HD community

For more information about HDBuzz, please visit their website or twitter.

Ashley Ferreira has worked in the non-profit sector for over 10 years, 4 of those years in the rare disease space. She currently serves as one of PicnicHealth's Community Partnership Managers where she works with different advocacy and patient organizations to share about the power of real-world data research and the importance of owning and having access to one's medical records. She currently resides in Southern California with her family and serves as a caregiver for her mother and siblings.  PicnicHealth Blurb: PicnicHealth’s mission is to empower communities to own their health and engage in real-world data research to change the future of rare and chronic diseases. PicnicHealth fundamentally believes that medical record ownership is the right of every patient. We empower individuals by not just giving them access to their medical timeline, but also serving as a bridge that connects patients and researchers to pave the way for medical discovery and advancements. PicnicHealth partners with some of the wo

Law Enforcement Education with Vicki Owen. If you'd like to contact Vicki to get materials to hand out to your local law enforcement, you can email her at [email protected]. 

Alzheimer's & Brain Awareness Month with Karen Owens. Link to Monthly Programs https://www.alzconnected.org/ https://www.alzheimersnavigator.org/ Link to Live Well Modules

This is HD with Teresa Snider

Seth and BJ join me to talk about the upcoming FDA listening session

Dr. Anne Kloos received her physical therapy degree from the University of Wisconsin-Madison and her doctoral degree in biology/neuroscience from Cleveland State University. She is currently a Professor Clinical in the Physical Therapy Division at the Ohio State University (OSU) where she teaches adult neurorehabilitation and neuroscience courses. Her research is focused on balance and gait interventions in individuals with neurodegenerative diseases. She is a board-certified neurologic physical therapy specialist. Dr. Kloos has worked as a consultant physical therapist at the OSU Movement Disorders Clinic since 2005. She is the Co-Director of the Ohio State University Neurologic Physical Therapy Residency Program. Dr. Deb Kegelmeyer has over 30 year’s clinical experience and is currently a Professor of Health and Rehabilitation Sciences at The Ohio State University. She has extensive clinical expertise having worked in acute care, out-patient therapy and spent 10 years as director of physical therapy at a sk

Jenna Heilman joins me to talk about collaboration

Beth Borowsky is an Executive Director and Senior Global Program Clinical Head in Neuroscience at Novartis Pharmaceutical Corporation, where she has been since 2018. Prior to Novartis, Beth spent 12 years doing clinical research and development for Huntington’s Disease, first at CHDI Foundation, where she was the Director of Translational Medicine, and then at Teva Pharmaceuticals, where she was a Senior Clinical Development Director. Prior to that, Beth spent 13 years in CNS drug discovery and development with Sanofi-Aventis and Synaptic Pharmaceuticals. Beth received a BS in Psychology and Neurobiology from Rutgers University, and a PhD in Pharmacology from Duke University Medical Center. She completed her post-doctoral training at the National Institute of Mental Health

Nicola is the co-founder and editor-in-chief for Rare Revolution Magazine. With a strong background in design and a passion for writing, Nicola is the driving force behind their creative vision, and uses her strategic experience in large-scale project planning to oversee their varied work, including RARE Youth Revolution. Nicola is co-founder and trustee of the charity Teddington Trust, volunteering her time to drive forward their mission—supporting families living with the ultra-rare condition xeroderma pigmentosum. Nicola is also author of the award-winning rare disease children’s book series, Little Ted. When not dedicating her time to rare disease, she is raising her two gorgeous sons, and is a rare mama herself. Chelsea's bio: I'm currently 22, and I'm in my final year studying Business Management and Psychology at the University of Aberdeen. My current job is a student notetaker, where I take notes for students with disabilities so they have sufficient notes for their studies. I am the Administrative V

Karen Anderson, MD, is a psychiatrist specializing in neuropsychiatry, and director of the Huntington’s Disease Care, Education and Research Center at MedStar Georgetown University Hospital. Dr. Anderson sees adult patients and families dealing with behavioral symptoms caused by neurological conditions such as Huntington’s disease, Parkinson’s disease, Alzheimer’s disease and brain injuries. She is also an associate professor of psychiatry and neurology at Georgetown University Medical Center. In addition to seeing patients and their families, Dr. Anderson is active in research. She’s currently the co-principal investigator on a clinical trial studying a medication to treat Huntington’s disease, and another studying a medication for tardive dyskinesia, a neurological disorder. Dr. Anderson is also involved in research to develop treatment for the behavioral symptoms of Parkinson’s disease, brain injury and Alzheimer’s disease. Jody Goldstein formally joined the staff of the HSG in March 2020. Her expertise i

Join us to hear about what Help 4 HD International is doing for awareness during the month of May. 

For more information: https://iamals.org/stories/jean-swidler/