Help 4 Hd Live!

End of Life: The Caregiver Perspective, Part 2

For more information about the UF Fixel Institute located in Gainesville, FL, please click here.

HDYO Ambassador: Molly

To read the blog post BJ Viau wrote, please click here

HDYO Ambassador Gemma

"Bri" joins me to discuss what it's like being gene-positive for HD and a scientist doing HD research.

End of Life: The Caregiver Perspective

We are Stronger Together

Please contact Jenna Heilman if you're interested in learning more about the HDYO Ambassadors program.

Please visit hdgenetics.com for more information.

HD Uncut with Gina 

As a way to wrap up HD Awareness Month, let's #LightItUp4HD on social media tomorrow! Share a video or photo of you with blue and/or purple glow sticks tomorrow. Make sure to use #LightItUp4HDandJHD and/or #2024LightItUp4HD. If you want, also share why you're lighting it up for HD/JHD.

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