Help 4 Hd Live!

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 nina.delucia@tevapharm.com.

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 eboulavsky@hdreach.org 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.

For more information, please visit join-hd.org

Please visit www.championsforhd.org/donate or http://www.ringwarscarolina.net/

Louanne's bio:  I stood at the foot of my husband's hospital bed... "Where is the book?" I asked the doctor. "What book?" he asked... "The book that tells me how to do this..." I was 33 years old and my 35 year old husband lay in the bed, just pronounced brain dead. It was the most devastating loss I had experienced in my life. Through this unexpected blow in life, I learned many lessons that I did not want to learn, but I did learn something profound. I wanted to help other people through the horribleness of grief. After doing much research on what type of certification I wanted to get in order to help people, I discovered the Grief Recovery Method website. I signed up for their certification program and became a Grief Recovery Specialist in 2016. The Grief Recovery Method is a practical, action based program that fit my beliefs and lifestyle. I have now helped over 150 people walk through the small and correct actions that allow people to come from pain to relief. I have heard over and over again how muc

Katie Jackson and I talk about the recent research announcements.

https://www.youtube.com/watch?v=1ytFB8TrkTo

FDA Listening Session Breakdown with Danielle