Help 4 Hd Live!

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

Please visit the Honestly HD website by going to www.honestlyhd.com Nina DeLucia is the Director of Consumer Marketing for AUSTEDO at Teva Pharmaceuticals.  She has worked in the life sciences industry for over 20 years for Pharmaceutical companies as well as for healthcare platforms such as WebMD and ePocrates.  She has a passion for patients and care partners and her goal is to represent their voices in her everyday work.  When she is not working, she can be found spending time with family and friends, training and racing for triathlons, or volunteering with her local youth group. She can be reached at nina.delucia@tevapharm.com.

Diagnosis and Disability