Help 4 Hd Live!

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.

Wishing for More with Brandon Pechette

For more information about Dr. Benjamin Gilmer and his book, please visit his website: https://benjamingilmer.com/ Please send Vince a letter or note if you can. He is feeling very down now and any support with your words would be very helpful to him: Dr. Vince Gilmer # 1190607, MCTC, 110 Wright St, Marion VA. 24354 

Advocate Perspective on Prilenia with Seth Rotberg

Enduring HD with Lori and Ariel

To learn more about the Institute for Gene Therapies, please visit their website: www.gene-therapies.org Congressman Erik Paulsen (MN-3) served from 2009 to 2019 as a leading member on the House Ways and Means Committee, which has jurisdiction over healthcare, economic, and trade policy. Erik currently serves as Chairman of the Institute for Gene Therapies, a 501(c)(4) that brings together experts across the healthcare system to advocate for a modernized policy framework that encourages transformative innovations, promotes patient access, and codifies transparent reimbursement practices. As a Member of Congress, Erik was the Chairman of the Joint Economic Committee focusing on innovation, entrepreneurship, digital trade, and other key economic issues. Erik also served as Co-Chair of the House Medical Technology Caucus and is a passionate advocate for innovative life science and medical technologies, the benefits they provide to patients, and the hundreds of thousands of jobs they support. In addition, Eri

Melissa Ryant joins me to talk about symptom hunting.

If you are interested in learning more about what we are talking about, please send an email to Lauren at [email protected]

You can purchase the book here. To learn more about Erin Paterson, please visit her website here.

Recap of HDYO Congress 2023 with Jenna Heilman

HD Uncut with Katrina Hamel - Gene-negative, caregiver for her mother and brother, and CFO of Help 4 HD International - comes on to talk to us uncut and uncensored about her HD journey.

Dr. Rachel Harding, Dr. Leora Fox, and Dr. Sarah Hernandez join me to discuss genetic modifiers of HD.

For more information about HD Reach and the upcoming education day and webinars, please visit www.hdreach.org