Help 4 Hd Live!

Chris Brown joins me for our very first episode of the HD Uncut series. 

Nichole Goble (she/her) is the current Director of Community Initiatives at Caregiver Action Network. She has been with the organization since 2017. As part of her role as Director of Community Initiatives, she manages activities/programs with non-funding community partners and moderates caregiver roundtables and learning collaboratives. She also presents to various community groups on a variety of topics related to caregiving and the resources and supports provided by CAN. Nichole brings a unique perspective to her role, being an individual with a disability that has been on both sides of the caregiving relationship. She also has a background in disability advocacy and experience working with youth and families. Please visit the Caregiver Action Network website at https://www.caregiveraction.org

Love in HD

Abby shares her story of accepting HD in her life

You can find Savannah on Instagram. Her handle is @lifeandlosswith_sav

Erika Boulavsky and I talk about our recent experience at the NCACP Conference

Please visit the Honestly HD website by going to www.honestlyhd.com Nina DeLucia is the Director of Consumer Marketing for AUSTEDO at Teva Pharmaceuticals.  She has worked in the life sciences industry for over 20 years for Pharmaceutical companies as well as for healthcare platforms such as WebMD and ePocrates.  She has a passion for patients and care partners and her goal is to represent their voices in her everyday work.  When she is not working, she can be found spending time with family and friends, training and racing for triathlons, or volunteering with her local youth group. She can be reached at [email protected].

Diagnosis and Disability

Crystal Collinsworth joins me to discuss her nonprofit, The Wishing Tree for HD.

To read the original article written by Christine Miserandino, please visit the following link: The Spoon Theory

To see some of the suggested holiday gifts, you can visit the following websites: Amazon list created by Lauren Holder: https://www.amazon.com/hz/wishlist/ls/36F3QP2FN6NE6?ref_=wl_share Adaptive Clothing: https://www.buckandbuck.com https://www.alzstore.com/gift-ideas-for-seniors-with-alzheimers-s/2278.htm?msclkid=0438956749231ab589edf6fc3eeab60a https://shop.alzheimers.org.uk/collections/gifts-for-people-with-dementia/products/throw-and-tell-ball?variant=42366932975770 https://www.alzstore.com/conversation-game-for-dementia-p/h012.htm

Katie and Katrina provide updates for 2022, and look forward to 2023.

Sarah Tabrizi is Director of the UCL Huntington’s Disease (HD) Centre, Joint Head of Department Neurodegenerative Disease at the UCL Queen Square Institute of Neurology, a Principal Investigator at the UK Dementia Research Institute, and Honorary Consultant Neurologist at the National Hospital for Neurology and Neurosurgery. She graduated in Biochemistry, then studied Medicine at the University of Edinburgh where she was awarded the 1992 Leslie Gold Medal for the most distinguished medical graduate. Sarah undertook her PhD and trained as an independent scientist at UCL, establishing a large basic bench science and translational research team focussed on finding disease modifying therapies for HD. She was PI on the first successful phase 1/2b trial of an antisense oligonucleotide (NEJM 2019) and currently serves on several SABs advising industry on the development of potential gene targeting and nucleic acid therapies for HD. Sarah has published over 350 peer-reviewed research papers. In 2014 she was elected a

Dr. Leora Fox from HDBuzz joins me

Leora and Rachel join me to answer questions about research and science

www.hdreach.org [email protected] 919-327-1804 Erika Boulavsky, MSW, LCSWA, serves as the Community Outreach Specialist for HD Reach. Erika is responsible for helping to build relationships and education within the medical community as well as assisting HD families navigate supportive resources. Erika has a BA in Sociology from Costal Carolina University and a Masters of Social Work from the University of South Carolina. She is originally from Myrtle Beach, SC and began her journey as a social worker for her local hospice agency in 2017. She moved to Raleigh, NC in 2020 and continued to work with the hospice population until starting with HD reach in July 2022. She and her partner have family members affected by HD and have been long time volunteers within HDSA youth programs, HDYO camps, and speakers at the HDSA convention. Erika and her partner enjoy relaxing with their two dogs, spending time with family and friends, and traveling as much as they can. Debbi Fox-Davis has enjoyed a 23-year career le

Symposium Recap with Maryann Emerick

For more information, please visit www.hdgenetics.com Wes is a Certified Genetic Counselor (CGC) through the American Board of Genetic Counseling. He earned a Master of Science in Genetic Counseling from Johns Hopkins University in 2021. As part of this program, Wes was an Intramural Research Trainee for the National Human Genome Research Institute (NHGRI) and National Cancer Institute (NCI) at the National Institutes of Health (NIH).  His graduate thesis research was titled “COVID-19 Impact on Genetic Counseling for Huntington’s Disease via Teleheath”. Prior to graduate studies, Wes worked as an undergraduate laboratory assistant for Dr. Jeff Carroll at Western Washington University, studying the neurobiology and behavior of mice modeling Huntington’s disease. In 2018, Wes was selected for HDSA’s Donald A King Research Fellowship and in 2019 earned a Bachelor of Science in Behavioral Neuroscience. Wes runs all of HD Genetics’ counseling sessions and will be the main point of contact throughout the genetic

Katie Jackson shares info on upcoming Symposium

For more great information on research, please visit hdbuzz.net.