March 19, 2023 - Advance Care Planning (ACP)
Virtual Webinar via the Southern CA support Group
Register HERE!

This ACP seminar will go over what it means to plan for the future and how to be prepared for any unexpected circumstances.
Audience: for anyone at any age, stage of health, and financial situation. 
Topics:  
• How to raise the issue of ACP? 
• How to discuss future medical care/priorities of care?
• How to share personal values and life goals?  
• What does quality of life mean to you? 
• Does my loved one know how to access my important documents to apply for services?

Gladys Newbury is a Licensed Clinical Social worker at the University of California, Irvine, part of the Neuroscience Department. Her professional concentration focuses on helping individuals with Neurodegenerative Diseases and Neurocognitive Disorders in acute and ambulatory settings. She utilizes a strength-based approach to support patients and families by providing psychoeducation related to presenting symptoms of trauma, loss, stress, anxiety, depression and the impact on the functioning of the brain. She is trained in a range of therapeutic modalities including Cognitive Behavioral Therapy (CBT), Narrative Therapy, Brief psychodynamic therapy, Grief therapy, and Motivational Interview (MI). Her practice field experience includes mental health, aging, advance care planning, Veteran/Military, and healthcare. She is an advocate for those who need assistance navigating the healthcare system, government programs, and community services. 

November 19, 2022 at the Mingei International Museum at Balboa Park Education Day Recordings

Speaker:  Dr. Jody Corey-Bloom, MD, PhD
Topic: Annual Research Update
Click here for full presentation

Speaker:  Edward Vega, Sr. Manager of Patient Advocacy for uniQure
Topic: Introduction to uniQure, Gene Therapy, and the HD-GeneTRX-1 (AMT-130)
Click here for full presentation

September 24, 2022 Virtual Education Day Recordings
Topic: Brain Donation, How to talk to others about HD ​Click here for full presentation.

Speakers
Sabina Berretta, MD - Harvard Brain Donation
Jenny Hill, LLPC - How to Talk to Others about HD
Marc Osborn - How to Talk to Others about HD

 

May 21, 2022 Virtual Education Day 
Topics: Predicitve Testing, Pre-imptlantaion Genetic Counsing and In-Vitro Feriliztation, HelpCure HD Foundation Grant Application Process, Patient Perspetive on PGT-IVF Click Here for Full Presention

Speakers
Lauren Korty, M.S., Certified Genetic Counselor
Dr. Irene Su, Professof Obstetrics, Gynecology an Reporductive Science, UCSD
Nicki Sims, Help CureHD Director of Clincial Patient Relations
Rachel, Mother to a healthy HD-free baby, and PGT-IVF Grant Recipient

February 26, 2022 Virtual Education Day
Topics: Advance Care Planning: Health Care Directives, Oral Health Care for Individuals with Huntington's Disease Click Here for Full Presentation

Speakers
Susan Reynolds, MSW, LICSW
Dr. Terry Tanaka

November 23, 2021 Virtual Education Day
Topic: Annual Research Update Click Here for Full Presentation

Speaker
Jody Corey- Bloom, MD, PHD

May 8, 2021 Virtual Education Day
Topics: Using Social Media, Fundraising Tutorial Click here for Full Presentation

Speakers
Matthew Santamaria
Mindy Schroeder, MPH, President HDSA San Diego Chapter 2020-2022