Help 4 Hd Live!

For more information on how you can get involved, please visit www.hdsa.org/takeaction

Next Generation of HD Warriors

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

HD Awareness Month 2021 Kickoff

We talk with Dr. Natalia Rocha about research she's been working on, specifically "Sex Differences in Huntington's Disease: Evaluating the Enroll‐HD Database" Dr. Rocha joined The University of Texas Health Science Center at Houston as a Postdoctoral Research Fellow in the Department of Psychiatry and Behavioral Science in January 2016. Since then, she has been focused on the study of immune/inflammatory parameters associated with the pathophysiology of Huntington’s disease. Due to common interests in age-related disorders and neuroimmunology/inflammation associated with neurodegeneration, she joined Dr. Soto’s group and she is currently a member of the Mitchell Center For Alzheimer’s Disease & Brain Disorders. Dr. Rocha has received numerous awards and she has published more than 90 peer review papers, which have been cited more than 1,500 times (h-index = 22; i-10 index = 42; Google Scholar).

For more information about the Pathway Program, please visit: https://www.hdreach.org/

Ben joined NHPCO in October 2020, bringing 30 years of leadership experience in educational, healthcare, and social service settings. Prior to joining the NHPCO senior leadership team, Ben was with Hospice of the Chesapeake where he served as President and Chief Executive Officer (2015-2020) and Chief Operating Officer (2013-2015). Prior to relocating to Maryland in 2013, he served as Chief Administrative Officer at San Diego Hospice and The Institute for Palliative Medicine. Ben has an extensive background in working with multidisciplinary clinical and management teams in a variety of educational and clinical settings. He holds a Master’s of Science in Counseling from San Diego State University, a Master’s of Education in Administrative Leadership from the University of San Diego, and a Bachelor of Sacred Theology and Philosophy from the Gregorian University in Rome, Italy. For more information about advance care planning, and to find the needed forms, please visit the National Hospice and Palliative Care

If you are interested in the ChANGE HD study, you can find out more at our website: www.changehd.org or come see us on Facebook: @ChangeHDresearch You can also call our toll-free number: 1-866-514-0858 or send us an e-mail at: [email protected]  

Tune in to hear Katie Jackson, Katrina Hamel, and Lauren Holder talk about the news that came out of Genentech/Roche.

For more information about Adira Foundation, please visit https://adirafoundation.org/about/letter-from-ceo/

TODAY (3/10) is the LAST DAY to register for HIPE. You can register at this link: https://www.help4hd.org/events-1/help-4-hd-hipe-virtual-myth-busters/form HDYO's virtual event for young adults is March 13th and 14th. You can register for this event at this link: https://hdyocongress2021.vfairs.com/

Show Your Stripes for Rare Disease Day and all year long! Visit https://www.rarediseaseday.org for more information on Rare Disease Day Great resource for rare diseases: https://rarediseases.info.nih.gov/  

Tracing your HD Ancestry

Carlos Briceño has started a new podcast that focuses on the caregiver journey and having a healthy emotional outlet¨ through creativity. This includes original poems, music and more. You can learn more about the podcast and submit content at: https://sharingaboutcaringpodcast.wordpress.com/ You can also read Carlos' column about caregiving at: https://huntingtonsdiseasenews.com/category/a-family-tradition-a-column-by-carlos-briceno/  

Let's talk about Kinect-HD trial with Dr. Erin Furr-Stimming and Dr. Dan Claasen

Dr. Tamara Maiuri works as a Research Associate in Dr. Ray Truant’s lab at McMaster University in Hamilton, Canada, where her research is focused on the role of the huntingtin protein in DNA repair. Tam is also an active member of the HD community who regularly participates in fundraisers, education events, and knowledge translation through HDBuzz.net.

Tune in to hear about Nancy Sweets horrible situation with a rehab facility that was supposed to be caring for her son living with HD and tested positive for COVID.

HD Mythbusters - Passing on HD

Katie Jackson and Dr. Sam Frank talk about the stages of Huntington's Disease.