Welcome to Help 4 HD Live! We are proud to broadcast credible information and education to the Huntington's disease community on a weekly basis. Help 4 HD Live! broadcasts every week providing vital information and inspiration to our Huntington's community. We have been blessed to interview many of our JHD/HD researchers, medical professionals, care providers and the pharmaceutical industry for six years. Join our Hosts, Katie Jackson each week for incredible programming and don’t forget to share this channel with your colleagues, family and friends. **Help 4 HD Live! is made possible through an education grant from Teva Pharmaceuticals and the Griffin Foundation. Thanks for tuning in! Help 4 HD International Inc.
**Please consult with you own physician for advice about any medical recommendation.
The New Normal
Samantha Griffin is a member of the HD community. She was a caregiver for her mom since the age of 15.
Dr. Hugh Rickards and I delve into the topic of diagnosing HD and what it means.
"People with HD may consult with a psychiatrist, a neurologist and a psychologist for their diverse symptoms, but what they really need, says Hugh Rickards, FRCPsych, MD, is a “Huntingtonologist”: A doctor who has been trained in all the diverse manifestations of the disease, from motor control to emotional issues to cognitive changes. Rickards, who is consultant in neuropsychiatry and honorary professor at the University of Birmingham, says that the emotional and cognitive problems of HD tend to get underplayed by doctors and researchers—and it shouldn’t be that way.
Rickards is a neuropsychiatrist at a large clinic for people with HD, and is also involved in recruiting people for research, including Enroll-HD. His own interest in the emotional landscape of HD has led him to spot similarities between HD and Asperger’s syndrome, the autism-like developmental disorder involving difficulty understanding other people’s feelings and states of mind."
HD Parity Act
For more information on how you can get involved, please visit www.hdsa.org/takeaction
Next Generation of HD Warriors
Next Generation of HD Warriors
HEATED Task Force
Professor Hugh Rickards is a self-avowed "HD-nerd". He loves all things HD and has been running a service for people with HD in Birmingham, UK since 1997. He's particularly interested in how people with HD view the world. He founded the HEATED project (Huntington's Equal Access to Effective Drugs) in 2020 to identify any barriers to effective treatment for people with HD and to find ways to overcome them. He is also the current chair of the Huntington's Disease Association (England and Wales). In his spare time, he is a barista in the local park and plays the piano a lot.
Ashley Clarke's bio: I am 28 years old and Huntington's first entered my life when i was around 14 years old, with the positive diagnosis of my dad. From the age of 17, i cared for my dad alongside my brother, attended school/ university, worked part-time and got involved with my local HD community. I was a volunteer, service user and board member over the years here in Northern Ireland. In 2016 i started the #Imnotdrunk Lifestyle Blog to raise awareness of Huntington's and share my story with the world. In 2018 i graduated from University and got to celebrate the day with my dad at his nursing home with a special party. This year (2021) i have signed a new contract to continue my work of 2 years with the Huntingtons Disease Association Northern Ireland. I have spent the past 10+ years living a life affected by Huntington's Disease, and it has made me the person i am today. I have friends around the world, attended many Huntingtons events, spoke publicly and turned Huntington's into a career i love!
Please visit the Family Matters website here: https://hdfamilymatters.com/