Help 4 Hd Live!

Please reach out to Londen Tabor ([email protected]) or Lauren Holder ([email protected]) to donate to Autumn's Adventure Fund. :)

Dr. Hayden is the CEO of Prilenia. He is an accomplished scientist and physician. He is a Killam Professor at the University of British Columbia and Senior Scientist at the Centre for Molecular Medicine and Therapeutics. He is also a Canadian Research Chair in Human Genetics and Molecular Medicine. Dr. Hayden was the President of Global R&D and Chief Scientific Officer at Teva from 2012-2017. He led the approval of Austedo for chorea in HD, the second drug ever to be approved for HD in the USA. Author of approximately 900 peer-reviewed publications, he has focused his research primarily on Huntington Disease, translational medicine, including genetics, lipoprotein disorders, predictive, personalized medicine and drug development. He also identified the first mutations underlying Lipoprotein Lipase Deficiency and developed gene therapy approaches resulting in the first approved gene therapy product (Glybera) in the world. Dr. Hayden is the recipient of numerous prestigious honors. Most recently, he was aw

Happy Social Work Day and Social Work Month to all the social workers out there!!

CHDI is currently having their HD Therapeutics Conference! HDBuzz has been reporting via live tweets on Twitter - they've done a great job in sharing the research. Seth Rotberg and Lauren Holder have been following along, and give a review.

Please visit the 3 Squeezes website by going to www.3squeezes.com Laura Vazac has a special, limited edition bracelet right now where 20% of the proceeds go to Help 4 HD International.

In this episode, Katrina Hamel and Katie Jackson talk about the public impact our families have to endure living in a family impacted by HD. 

Melissa (Dilley) Ryant is 34 years old and originally from Ohio. Her mom was the first in her family to be formally diagnosed with HD, and these symptoms began when Melissa was a child. Her mom passed away on 2/14/2008. When Melissa was 24, she tested gene negative for HD. Struggling with all of the complexities of survivors guilt, she connected with the NE Ohio Chapter, and attended her first convention in 2013. Melissa volunteered on the NYA board for about 7 years. Erika Boulavsky is 30 years old and originally from South Carolina. Her mom was diagnosed while Erika was in elementary school. Fortunately her mom has mild symptoms that are managed and is still doing well today! Erika is at risk- after attending her first convention in 2012, Erika didn’t return to an HD event until an NYA retreat hosted in Denver in 2016. Erika volunteered on the NYA board for about 3 years after that. Now, Melissa and Erika are living in Raleigh, NC. They recently got engaged this past December! They love spending time with

Sandra Kostyk received her MD, PhD degrees from the Pritzker School of Medicine at the University of Chicago and completed her residency in neurology at the Massachusetts General Hospital, Harvard Medical School. Following her residency, she was awarded an NIH physician scientist K award. Dr. Kostyk has been medical director of the HDSA Center of Excellence at The Ohio State University since 2000. She has participated in numerous clinical trials related to Huntington’s disease and continues to work on increasing HD awareness and to improve care options for individuals and families affected by HD. Casey Mitchell currently works in clinical research at the Ohio State University focusing on Huntington’s disease. Casey entered clinical research as a Clinical Research Assistant working with both movement disorders and cognitive disorders in the department of neurology at Ohio State during the fall of 2019. She graduated winter of 2017 from Ohio Dominican University with high honors obtaining a Bachelor’s of arts

Dr. Alby Richard is a movement disorders neurologist and assistant professor in the department of Neuroscience at the University of Montreal, in addition to being an adjunct professor in the Department of Neurology and Neurosurgery of McGill University. Dr. Richard completed a Ph.D. in Neuroscience at the Montreal Neurological Institute (McGill University), followed by medical school at the University of Calgary, then residency training in adult neurology back at McGill University. He pursued fellowship training in movement disorders and cognitive neurology at the Beth Israel Deaconess Medical Center (Harvard Medical School) in Boston, Massachusetts.

HIPE Orlando Recap

If you would like to join us on Discord, here is the link: https://discord.gg/VeUzU2TA

Genetic discrimination is still happening every day. Know your rights. Learn about the GINA Act, and follow GINAhelp.org - Your GINA Resource Great article: Genetic Discrimination in the Workplace: What You Need to Know - ToughNickel

Katie and Katrina do a wrap up for 2021!

For more information about HD-CAB, please visit Introducing HD-CAB, OneVoice4HD – European Huntington Association (eurohuntington.org)

Accelerate HD 

Grief and Depression During The Holidays

Recording of an interview with the coordinators of PREVENT-HD when I traveled to Madison, WI.

Nicola is the co-founder and editor-in-chief of RARE Revolution Magazine, a not-for-profit magazine and movement dedicated to amplifying the voice of rare disease stakeholders globally. RARE Revolution is also the home of the dedicated youth platform, RARE Youth Revolution which Nicola oversees. Nicola is co-founder and trustee of the charity Teddington Trust, volunteering her time to drive forward their mission—supporting families living with the ultra-rare condition xeroderma pigmentosum, a condition her own son has. Nicola is also author of the award-winning rare disease children’s book series, Little Ted. When not dedicating her time to rare disease, she is raising her two gorgeous sons.

Brenda started at the UWMC in 1995 after graduating as a registered nurse. She has devoted her career to working exclusively with patients with neurological disease in Urology. She began working half-time with patients and families in the Huntington’s disease clinic 10 years ago while continuing to work in Urology. Brenda has a passion for her patients and their families and has found her work in the HD community to provide unprecedented fulfillment. In her time away from work she enjoys fishing.

Jackie Harrison is a member of the HD community who created a very fun way to bring awareness to HD. Visit @sybilontour on Twitter to see all the amazing places Sybil has been. :)