Help 4 Hd Live!

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. :)

Ask Autumn

Dr. Wild is a Professor of Neurology at University College London, a Consultant Neurologist at the National Hospital for Neurology and Neurosurgery in London’s Queen Square, and Associate Director of UCL Huntington’s Disease Centre. He runs clinics in general neurology, neurogenetic movement disorders and Huntington’s disease. He leads a team of researchers aiming to accelerate the development of new therapies to make a real difference for people impacted by Huntington’s disease. Dr. Wild believes that “Scientists have a duty to make their work accessible and understandable to the people who need it most.” So in 2010, I co-founded HDBuzz, an online source of reliable, impartial, easy-to-understand information about HD research. HDBuzz is now the world’s foremost HD research news source. In recognition of this, he was awarded the 2012 Michael Wright Community Leadership Award by the Huntington Society of Canada and the 2014 Research Award by the Huntington’s Disease Society of America (which is where I first

Toronto author and public speaker, Erin Paterson, tested gene positive for Huntington’s Disease (HD) in 2006. Shortly after she started suffering from depression, then received more crushing news, she was infertile.  Despite those diagnoses she was determined to have a family and live a joyful life. Her stories have appeared on over a dozen sites including KevinMD, TheMighty and HuntingtonsDiseaseNews.com. She is the author of, All Good Things:  A Story About Genetic Testing, Infertility and One Woman’s Relentless Search for Happiness You can visit Erin's website at: https://www.erinpaterson.com/ You can get the book on Amazon here.