Help 4 Hd Live!

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 lauren@help4hd.org

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  

Chris Brown joins me for our very first episode of the HD Uncut series. 

Nichole Goble (she/her) is the current Director of Community Initiatives at Caregiver Action Network. She has been with the organization since 2017. As part of her role as Director of Community Initiatives, she manages activities/programs with non-funding community partners and moderates caregiver roundtables and learning collaboratives. She also presents to various community groups on a variety of topics related to caregiving and the resources and supports provided by CAN. Nichole brings a unique perspective to her role, being an individual with a disability that has been on both sides of the caregiving relationship. She also has a background in disability advocacy and experience working with youth and families. Please visit the Caregiver Action Network website at https://www.caregiveraction.org

Love in HD

Abby shares her story of accepting HD in her life

You can find Savannah on Instagram. Her handle is @lifeandlosswith_sav

Erika Boulavsky and I talk about our recent experience at the NCACP Conference