Help 4 HD Live!

Recap of my visit with UniQure for HD Awareness Month

Thom Hart is the Director of Outreach with the Critical Path Institute (C-Path), which is a nonprofit created by the FDA to "improve the drug development process. It operates as a neutral third party to enable scientists from the regulated industry and international regulatory agencies to work together with scientists from academia and patient groups to improve the drug development process. (Wikipedia)"  You can visit their website here: https://c-path.org/ If you are interested in contacting Thom directly, please reach out to Lauren Holder at lauren@help4hd.org, and she will connect you.

For more information about the HDYO Ambassadors program, please visit www.hdyo.org.

I recently attended the World Orphan Drug Congress in Boston, MA. The audio for this episode is from my YouTube video that you can find here: Dying to Live

Meredith Patterson is a performing artist, author, and producer whose family was impacted by Huntington's Disease. To learn more about her, please visit her website: https://meredithpatterson.com/ She also has a podcast called "Confessions of an Actress". This week on her podcast, she shared about Huntington's Disease as a way to raise awareness. You can check out the episode here: https://podcasts.apple.com/us/podcast/confessions-of-an-actress/id1456371818?i=1000652286159

Piere Rodriguez-Aliaga, PhD, is a young investigator whose current HD research is funded by the Hereditary Disease Foundation. He is using a new Nobel Prize-winning technology called Optical Tweezers to study one huntingtin molecule at a time, which allows access to structural information about pathogenic and non-pathogenic huntingtin variants with unprecedented detail. Please visit the Hereditary Disease Foundation website for more information.

Jennifer Petrillo Billet PhD is an Executive Director and Program Lead for investigational dalzanemdor, or SAGE-718, at Sage Therapeutics. She is responsible for driving the global development strategy, including delivery of the right evidence for key stakeholders including regulators, payers, and providers, and patients. Dalzanemdor is being evaluated for indications in Huntington’s Disease, Alzheimer’s Disease, and Cognitive Impairment in Parkinson’s Disease. Jennifer has 20 years of deep expertise in the measurement science of Clinical Outcomes Assessments (COAs) and significant experience in all phases of drug development. Jennifer received her Bachelors in Economics at Virginia Tech, and her PhD from the London School of Hygiene and Tropical Medicine (LSHTM). She has published and presented extensively on health economics and outcomes research topics, and clinical research, across a range of leading journals and conferences.

Please visit www.hdyo.org for more information

Please visit the Factor-H website for more information. Please also tune in to the Factor-H YouTube Channel on Saturday 3/23/2024 at 12 pm EST for HD Gratitude Day events in Venezuela.

Samantha and I got to participate in a focus group together. Here our thoughts about research and more!!

HDYO Ambassadors Series: Ep 1. with Robyn

Happy 1st anniversary of the #HDUncut Series on #Help4HDLive! This show is exactly why I came up with the series in the first place. John Howard has Huntington's Disease. He's also a very talented poet. On this show, he shares some new poetry with the HD Community.

Happy Valentine's Day! Join Erika Boulavsky from HD Reach and Lauren Holder from Help 4 HD in their conversations with Dave and Susie Hodgson about their Layers of Love. Dave and Susie's unique story talks about caring for both of their spouses with HD, how they found each other, and how they continue to support one another while caring for their kids with HD. To watch more webinars from the "Rare Topics for a Rare Disease" Series, please visit HD Reach's website here.

To follow Tanita Allen, please visit her website: https://tanitaallen.com/ Here is the link to purchase a copy of Tanita Allen's book: We Exist

Please visit the Hereditary Disease Foundation website to find out more information.

If you'd like to follow Charlotte on social media, please visit her website: https://linktr.ee/thehdhun Instagram handle - @thehdhun TikTok - Click Here

HD Uncut, Ep. 11, with Dina De Sousa

Jamie L. Hamilton, PhD, is the Director of Clinical Outcome Assessments at CHDI. She led the HD Charge study, which focused on the indirect costs associated with being affected by Huntington's Disease.

Greater than HD in 2024

HD Uncut, Ep. 10 with Leah