Welcome to Help4HD Live! We are proud to broadcast credible information and education to the Huntington's disease community on a weekly basis. Help4HD Live! broadcasts every week providing vital information and inspiration to our Huntington's community. We have been blessed to interview many of ou…
Help 4 HD Updates for 2025 with Katie Jackson
Pay What You Can: www.paywhatyoucanpeersupport.com/faqs Alliance of Hope: www.allianceofhope.org or phone number is 847-868-3313 National Suicide Hotline: If you live in the US, contact the National Suicide Prevention Lifeline by calling 988 or texting “Hello” to 741741. Their website is www.988lifeline.org They also have a chat option and services for deaf/HoH For other countries, visit this website: www.allianceofhope.org/feeling-suicidal HDSA Telehealth: www.hdsa.org/find-help/community-social-support/hdsa-telehealth/ You can also contact them by emailing HDSAinfo@HDSA.org or calling their Helpline at 800-345-4372
Erika (HD Reach) and Lauren (Help4HD Podcast) talk with Clinical Social Worker and Hospice Supervisor Shivani Borah about Hospice and the end-of-life process. We discuss medications, advanced directives, and the myths and misunderstandings surrounding Hospice care. Join us as we dive into a very difficult topic openly and honestly. The link to the webinar can be found here: https://www.youtube.com/watch?v=e1CxsZP5f8o
The Help 4 HD Resource Database has a resource called mRelief, which is a nonprofit that helps you determine eligibility and sign up for SNAP and other supplemental programs by using a quick survey via text message. You can text the word “Food” to 74544 to complete the screening survey over text or visit their website at www.mrelief.com. www.hungerfreeamerica.org Full Cart, which is a national food assistance program available to individuals and families who are facing financial hardships and food insecurity. www.fullcart.org. Dysphagia Outreach Project and they have a Dysphagia Food Bank program: www.dysphagiaoutreach.org/apply-for-assistance. www.lasagnalove.org/request www.helpingamericansfindhelp.org/christmas-assistance-help-by-state. Reddit page “Santa's Little Helpers”. Parents and caregivers can submit requests for toys or other gifts for their children or loved ones and the general population can donate those items directly to you. They also have great suggestions of where else to find gifts for your loved ones and free or very low-cost activities to do with your families instead of gifts. You can find the Reddit page at www.reddit.com/r/SantasLittleHelpers.
Update about Sage Therapeutics with Lauren Holder
If you'd like to check out the video, here's the link: https://youtu.be/NTiqiAeBMOw
Please visit the Rare Patient Voice website for more information, or reach out to Lauren Holder at lauren@help4hd.org WES MICHAEL Founder and President, Rare Patient Voice Wes Michael founded Rare Patient Voice in 2013 to give patients and family caregivers the opportunity to voice their opinions through taking part in research studies. Rare Patient Voice has now recruited for thousands of studies and rewarded patients and family caregivers with over $13 million for their participation. Many have been recruited in person by Wes and his team at patient events and through a robust referral program with patient advocacy and support groups. Rare Patient Voice now covers over 1,500 rare and non-rare diseases and conditions and has expanded from the United States to Canada, the United Kingdom, France, Germany, Italy, Spain, Australia, and New Zealand. Before launching Rare Patient Voice, Wes worked for healthcare market research firm Kantar Health. He previously was a brand manager and market research manager at McCormick (the spice company) and General Mills (working on Wheaties, Total and Kix cereals). He has a BA from the University of Pennsylvania (with a year at Edinburgh University) and an MBA from the University of Chicago. Wes lives outside Baltimore, Maryland, with his wife, Cathy, children Julia and Cliff, grandson Taylor, and dog Stanley.
Lauren Holder recently did a webinar with HDYO's Jenna Heilman, Prof. Hugh Rickards, and HDYO Ambassador Molly about breaking down barriers when it comes to access to a potential treatment. You can watch the full video here: https://www.youtube.com/watch?v=y6CrrVGfBTk Breaking Down Barriers is sponsored by Roche, Sage Therapeutics, Teva Pharmaceutical, uniQure, Wave Life Sciences, The Griffin Foundation, Neurocrine Biosciences and PTC Therapeutics.
Our Lived Experience (Panel from Help 4 HD Symposium)
Helpful information on being prepared for a disaster: https://www.ready.gov/disability Information about FEMA: https://www.disasterassistance.gov/ Here are some tips for people with disabilities to prepare for disasters: Make a plan Create a network of people who can help you in an emergency, and keep their contact information in a safe place. You can also consider giving a trusted person a key to your home. Prepare for evacuation Make sure your home's exits are wheelchair accessible, and practice emergency evacuation drills with your family and personal care attendant. Also, plan for accessible transportation in case you need to evacuate or get around during or after a disaster. Prepare an emergency kit Include items to meet your individual needs, such as extra batteries for your wheelchair, medications, and a medical alert system. If you are deaf or hard of hearing, you can include a weather radio with text display, extra hearing aid batteries, and a TTY. If you are blind or have low vision, you can include Braille labels or large print on your emergency supplies. Register with your local emergency management office Many cities and counties have voluntary registries for people with disabilities. Know your capabilities Consider what you will be able to do for yourself and what assistance you may need. Prepare for different hazards Think about how to prepare for different hazards that could impact your community, and what your alternative shelter will be.
End of Life: The Caregiver Perspective, Part 2
For more information about the UF Fixel Institute located in Gainesville, FL, please click here.
To read the blog post BJ Viau wrote, please click here
"Bri" joins me to discuss what it's like being gene-positive for HD and a scientist doing HD research.
End of Life: The Caregiver Perspective
Please contact Jenna Heilman if you're interested in learning more about the HDYO Ambassadors program.
Please visit hdgenetics.com for more information.
As a way to wrap up HD Awareness Month, let's #LightItUp4HD on social media tomorrow! Share a video or photo of you with blue and/or purple glow sticks tomorrow. Make sure to use #LightItUp4HDandJHD and/or #2024LightItUp4HD. If you want, also share why you're lighting it up for HD/JHD.
Recap of my visit with UniQure for HD Awareness Month
Thom Hart is the Director of Outreach with the Critical Path Institute (C-Path), which is a nonprofit created by the FDA to "improve the drug development process. It operates as a neutral third party to enable scientists from the regulated industry and international regulatory agencies to work together with scientists from academia and patient groups to improve the drug development process. (Wikipedia)" You can visit their website here: https://c-path.org/ If you are interested in contacting Thom directly, please reach out to Lauren Holder at lauren@help4hd.org, and she will connect you.
For more information about the HDYO Ambassadors program, please visit www.hdyo.org.
I recently attended the World Orphan Drug Congress in Boston, MA. The audio for this episode is from my YouTube video that you can find here: Dying to Live
Meredith Patterson is a performing artist, author, and producer whose family was impacted by Huntington's Disease. To learn more about her, please visit her website: https://meredithpatterson.com/ She also has a podcast called "Confessions of an Actress". This week on her podcast, she shared about Huntington's Disease as a way to raise awareness. You can check out the episode here: https://podcasts.apple.com/us/podcast/confessions-of-an-actress/id1456371818?i=1000652286159
Piere Rodriguez-Aliaga, PhD, is a young investigator whose current HD research is funded by the Hereditary Disease Foundation. He is using a new Nobel Prize-winning technology called Optical Tweezers to study one huntingtin molecule at a time, which allows access to structural information about pathogenic and non-pathogenic huntingtin variants with unprecedented detail. Please visit the Hereditary Disease Foundation website for more information.
Jennifer Petrillo Billet PhD is an Executive Director and Program Lead for investigational dalzanemdor, or SAGE-718, at Sage Therapeutics. She is responsible for driving the global development strategy, including delivery of the right evidence for key stakeholders including regulators, payers, and providers, and patients. Dalzanemdor is being evaluated for indications in Huntington's Disease, Alzheimer's Disease, and Cognitive Impairment in Parkinson's Disease. Jennifer has 20 years of deep expertise in the measurement science of Clinical Outcomes Assessments (COAs) and significant experience in all phases of drug development. Jennifer received her Bachelors in Economics at Virginia Tech, and her PhD from the London School of Hygiene and Tropical Medicine (LSHTM). She has published and presented extensively on health economics and outcomes research topics, and clinical research, across a range of leading journals and conferences.
Please visit www.hdyo.org for more information
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.
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