Help 4 Hd Live!

Lauren shares her feelings about the holidays and her recent birthday.

Dr. Katja Obieglo joins Lauren to talk about the research Vico Therapeutics is doing. To learn more, please visit their website here.

If you'd like to learn more about HD-CAB, including how to become a member, please visit the website here. You can also contact Jenna Heilman at jenna@hdyo.org. 

Rita Gandhy is a movement disorders neurologist and comes with over 4 years of experience at Roche/Genentech. Prior to her current work in USMA, Rita led the Study Review Team for a planned tominersen study in late onset Huntington's Disease, being responsible for developing the protocol and study set up. Before USMA, Rita was in the Product Development OMNI LEAD safety group as Safety Medical Director leading the safety strategy for the initiation and execution of a number of therapeutic areas including the anti-tau molecule semorinemab. Rita obtained her undergraduate degree in theology and biology from University of Rochester, and her Medical Degree at Southern Illinois University School of Medicine. She completed her internship at Illinois Advocate Masonic hospital in Chicago, a year of Physical Medicine and Rehabilitation at Stanford and neurology residency at the University of California, San Diego. She has an additional neurology subspecialty training in movement disorders from Georgetown University. S

Chris Brown joins me to talk about the age of onset in HD

Sarina Smith

If you'd like to join Kayla's Facebook group, please click here.

Lauren's Experience with Surveyor

"Sex, Drugs, Rock 'n Roll...and HD" with Erika B. and Dr. Katherine McDonell

Dr. Jack Lam and Erika B. join me to discuss CBD, cannabis and HD

Kelly Clark is a caregiver for her husband. They are currently using photobiomodulation therapy on her husband to help with his HD. For more information about the research being done, please visit Vielight at vielight.com Please add Kelly as a referral if you purchase from Vielight! Kelly Clark. – kanclark@gmail.com For the PowerPoint Kelly was showing me, please click here.

Kathryn Jordan is a model, writer and HD advocate who currently lives in Toronto. She has a blog she uses for awareness, you can visit it at this link: www.popularizementalhealth.com You can also follow Kathryn on Instagram - @vintagebabetoronto

Erika Boulavsky of HD Reach and I sat down with Jeff Marsocci to talk about when life gets messy - we talked about divorce, disability and so much more! This webinar is a great resource. To watch all of the Rare Topics for a Rare Disease webinars, please visit the HD Reach website here. You can also view this webinar on YouTube at https://www.youtube.com/watch?v=KxIwOU6m7K8.  

HD Uncut, Ep. 5 - Erika and Olivia

This project was inspired by increasing evidence that bugs inhabiting the gut influence brain function and dysfunction, and that the gut microbial community is abnormal in mice and people with Huntington’s disease. It has also been shown that the imbalanced gut bacterial profile observed in individuals carrying the HD gene is associated with lower cognitive performance and poorer clinical outcomes. In HD mice, Dr. Hannan’s lab recently showed that this phenomenon appears even before motor symptoms. However, they do not yet fully understand the mechanisms mediating this imbalance nor do they know whether an intervention that returns the community of bugs towards a normal profile might be therapeutic. This project will address these important questions in HD mice by using environmental, microbial and pharmacological interventions targeting the gut microbial imbalance and hopefully ameliorating brain dysfunction. This project may facilitate future development of new treatments for people with HD.

To participate in the FOCUS Online study, please visit the following link: https://forms.office.com/r/eXfRT1ZanZ. Matthew Roché, PhD, is the Director of Outcomes Research. Matt earned his PhD in clinical psychology at State University of New York at Binghamton and had pre- and post-doctoral appointments in the Division of Schizophrenia Research at the University of Medicine and Dentistry/Robert Wood Johnson Hospital and Rutgers University. After completing his training, Matt served in Research Specialist and faculty capacities at Rutgers where he worked collaboratively with pharmaceutical, private research, and start-up firms;  worked on scale development for clinical phenomenon in schizophrenia and schizophrenia-spectrum disorders; assisted in protocol development for projects evaluating the role of Huntington’s disease, schizophrenia, and Parkinson’s disease on retinal cell functioning; and, developed and led trainings on clinical rating scales and diagnostic interviewing. In addition, Matt taught in vario

Please visit the HD Reach website for more webinars with me and Erika.

HD Uncut, Ep. 4 with Chris Brown

Charlene Smith bio: "I am a project scientist in the lab of Dr Leslie Thompson at UC Irvine. I have worked here for 8 years studying Huntington's disease using HD patient derived stem cells. During that time I have received funding from the Hereditary Disease Foundation and the Huntington's Disease Society of America. I graduated in 2015 with my PhD from Cardiff University and wanted to pursue research in Huntington's disease." Gong-Her Wu bio: "In 2015, I proudly earned my Ph.D. from Tsing Hua University, marking a significant milestone in my academic journey. Subsequently, I had the privilege of joining the esteemed lab of Dr. Wah Chiu, where I expanded my expertise further and contributed to cutting-edge research. From 2019 to 2023, I was fortunate to receive support from the Hereditary Disease Foundation (HDF), a valuable recognition of my work's importance and potential impact. Now, I am a research scientist at Stanford University, working in the esteemed lab of Dr. Wah Chiu. Over the past six years, m

Kevin's journey with WeHaveAFace began over a decade ago when he joined as a regional advocate. Recognizing the urgent need for advocacy in the HD community, he immersed himself in the organization's mission to raise awareness and support for those affected by the disease. In 2015, his commitment and expertise led him to assume the position of Patient Advocate, where he worked tirelessly to ensure that HD patients received the care and attention they deserved. Driven by his passion for advocacy and the desire to make a difference, Kevin ultimately ascended to the role of President within WeHaveAFace Canada. In this capacity, he continues to lead the organization with unwavering dedication and a clear vision. Drawing inspiration from James Valvano, he embodies Valvano's spirit of relentless pursuit in furthering Project Change and pushing for positive change in the HD community. Please visit www.wehaveaface.org/change for more information.