Help 4 HD Live!
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431 episodes
Please visit the Factor-H website for more information. Please also tune in to the Factor-H YouTube Channel on Saturday 3/23/2024 at 12 pm EST for HD Gratitude Day events in Venezuela.
Samantha and I got to participate in a focus group together. Here our thoughts about research and more!!
HDYO Ambassadors Series: Ep 1. with Robyn
Happy 1st anniversary of the #HDUncut Series on #Help4HDLive! This show is exactly why I came up with the series in the first place. John Howard has Huntington's Disease. He's also a very talented poet. On this show, he shares some new poetry with the HD Community.
Happy Valentine's Day! Join Erika Boulavsky from HD Reach and Lauren Holder from Help 4 HD in their conversations with Dave and Susie Hodgson about their Layers of Love. Dave and Susie's unique story talks about caring for both of their spouses with HD, how they found each other, and how they continue to support one another while caring for their kids with HD. To watch more webinars from the "Rare Topics for a Rare Disease" Series, please visit HD Reach's website here.
To follow Tanita Allen, please visit her website: https://tanitaallen.com/ Here is the link to purchase a copy of Tanita Allen's book: We Exist
Please visit the Hereditary Disease Foundation website to find out more information.
If you'd like to follow Charlotte on social media, please visit her website: https://linktr.ee/thehdhun Instagram handle - @thehdhun TikTok - Click Here
Jamie L. Hamilton, PhD, is the Director of Clinical Outcome Assessments at CHDI. She led the HD Charge study, which focused on the indirect costs associated with being affected by Huntington's Disease.
If you'd like to follow Christy on social media, you can find her here: Facebook - www.facebook.com/ChristyDearien Instagram - @christydearien
If you would like to send your resources and tips and tricks to Anna for our new database, please go to the Help 4 HD website - www.help4hd.org - go to Contact Us and submit. Anna is regularly checking submissions through the website. You can also send it directly to her email at anna@help4hd.org
For more information about all that Help 4 HD is doing, please visit the website - www.help4hd.org
Coping During the Holidays with Melissa W.
Lauren shares her feelings about the holidays and her recent birthday.
Dr. Katja Obieglo joins Lauren to talk about the research Vico Therapeutics is doing. To learn more, please visit their website here.
Dr. Hett's research uses non-invasive MRI technology to investigate HD-related changes in the circulation of the fluid that bathes the nervous system, known as cerebrospinal fluid (CSF). By measuring the flow of CSF in people, Dr. Hett will attempt to understand better how it changes with HD, and, as a result, potentially determine how drug delivery methods might be tailored more personally. This novel idea emerged from a small pilot study, but could have major implications for the delivery of huntingtin-lowering therapies. If you are interested in participating in Dr. Hett's research, please reach out to me, and I will get you in touch with him. My email is lauren@help4hd.org.
If you'd like to learn more about HD-CAB, including how to become a member, please visit the website here. You can also contact Jenna Heilman at jenna@hdyo.org.
Rita Gandhy is a movement disorders neurologist and comes with over 4 years of experience at Roche/Genentech. Prior to her current work in USMA, Rita led the Study Review Team for a planned tominersen study in late onset Huntington's Disease, being responsible for developing the protocol and study set up. Before USMA, Rita was in the Product Development OMNI LEAD safety group as Safety Medical Director leading the safety strategy for the initiation and execution of a number of therapeutic areas including the anti-tau molecule semorinemab. Rita obtained her undergraduate degree in theology and biology from University of Rochester, and her Medical Degree at Southern Illinois University School of Medicine. She completed her internship at Illinois Advocate Masonic hospital in Chicago, a year of Physical Medicine and Rehabilitation at Stanford and neurology residency at the University of California, San Diego. She has an additional neurology subspecialty training in movement disorders from Georgetown University. She subsequently practiced clinical neurology, as the Director of the Movement Disorder program at Marshall University in Huntington, West Virginia. There she developed a comprehensive movement program including Deep Brain Stimulation and other treatment modalities including comprehensive inpatient and outpatient care for Parkinson's disease and Huntington's disease patients. To find out if you can join the clinical trial, or for more information, please speak to your doctor today or contact the Genentech Trial Information Support Line (TISL) at 888-662-6728 (Monday - Friday, 5am - 5pm PT). Or https://clinicaltrials.gov/ trial #NCT05686551
Chris Brown joins me to talk about the age of onset in HD
If you'd like to join Kayla's Facebook group, please click here.
"Sex, Drugs, Rock 'n Roll...and HD" with Erika B. and Dr. Katherine McDonell
Dr. Jack Lam and Erika B. join me to discuss CBD, cannabis and HD
Kelly Clark is a caregiver for her husband. They are currently using photobiomodulation therapy on her husband to help with his HD. For more information about the research being done, please visit Vielight at vielight.com Please add Kelly as a referral if you purchase from Vielight! Kelly Clark. – kanclark@gmail.com For the PowerPoint Kelly was showing me, please click here.
Kathryn Jordan is a model, writer and HD advocate who currently lives in Toronto. She has a blog she uses for awareness, you can visit it at this link: www.popularizementalhealth.com You can also follow Kathryn on Instagram - @vintagebabetoronto
Erika Boulavsky of HD Reach and I sat down with Jeff Marsocci to talk about when life gets messy - we talked about divorce, disability and so much more! This webinar is a great resource. To watch all of the Rare Topics for a Rare Disease webinars, please visit the HD Reach website here. You can also view this webinar on YouTube at https://www.youtube.com/watch?v=KxIwOU6m7K8.
