Podcasts about disease society

Meet up before and after seeing ‘Thunderbolts*' in THE BIG SHOW! Enjoy the latest movie in the Marvel Cinematic Universe. Hang with the team from Mostly Superheroes and meet our partners Team Jakey. Meet up around 11am. Movie will start a 12pm on Saturday May 10th. Afterparty at 3pm in the lobby! At Alamo Drafthouse St. Louis on May 10th and show your ticket stub in the lobby for your chance to win the best St. Louis prizes from our local friends: St. Louis Symphony Orchestra The Fabulous Fox City Winery St. Louis 2 Rivers Comic Con May 23rd-25th  4 Hands Brewing Company: Password for 1 Free Beer MOSTLY* Limited Edition Thunderbolts* Pints from Alamo Drafthouse St. Louis The Gramophone Gift Cards The Voltron Store: 15% OFF Promo Code MOSTLY https://store.voltron.com/ Team Jakey Hendel's Florissant The Royale Food & Spirits Steve's Hot Dogs and more! RSVP on Facebook and with your email at www.mostlysuperheroes.com/events. Walk-in hangouts are welcome!   Buy Tickets Also at the event, learn more about our partners: Team Jakey: End The Stigma Provident Behavioral Health St. Louis AFSP Missouri Huntington's Disease Society of America Missouri. If you or someone you know is down or struggling, call 988 or text 741741. You're not alone. You got this. We're in this together. *Must be 21+ to redeem 4 Hands deal. T&C apply.

Ep. 251 - How Purpose Cuts Through the ChaosWhat do you do when life goes sideways? When the van breaks down? When the chaos hits?In this raw and real episode, Heath Mullikin shares how purpose—grounded in faith—can guide us through life's most frustrating moments. Plus, he introduces a special project from his son Drake: www.bummus.shop, a clothing line that gives back to the Huntington's Disease Society of America.

Tonight! Buy Your Tickets Now! www.mostlysuperheroes.com/events  You just found your new movie club. Mostly Superheroes the podcast proudly presents the Screen & Social The Extended Movie Experience. See 'Captain America: Brave New World' in theaters with Mostly Superheroes Friday February 21st at Alamo Drafthouse St. Louis in the City Foundry and get more for your movie ticket.  Meetup starts at 5pm - movie at 6pm. Buy your tickets for the 6pm show, and show us your ticket stub to spin the prize wheel for a chance to win prizes from City Winery STL, Alamo Drafthouse Cinema, The Fabulous Fox, The Factory STL, Planet Score Records, The Voltron Store, 4 Hands Brewing Company, Team Jakey and more! Plus share your movie review and get featured on Mostly Superheroes the podcast and help us spread awareness for Team Jakey: End The Stigma and the Huntington's Disease Society of America Missouri.  Buy Your Tickets Now www.mostlysuperheroes.com/events   

One week from today! Buy Your Tickets Now! www.mostlysuperheroes.com/events  You just found your new movie club. Mostly Superheroes the podcast proudly presents the Screen & Social The Extended Movie Experience. See 'Captain America: Brave New World' in theaters with Mostly Superheroes Friday February 21st at Alamo Drafthouse St. Louis in the City Foundry and get more for your movie ticket.  Meetup starts at 5pm - movie at 6pm. Buy your tickets for the 6pm show and you are automatically entered for a chance to win prizes from City Winery STL, Alamo Drafthouse Cinema, Planet Score Records, The Voltron Store, 4 Hands Brewing Company, and more! Plus share your movie review and get featured on Mostly Superheroes the podcast and help us spread awareness for Team Jakey: End The Stigma and the Huntington's Disease Society of America Missouri.  Buy Your Tickets Now www.mostlysuperheroes.com/events 

One week from today! Buy Your Tickets Now! You just found your new movie club. Mostly Superheroes the podcast proudly presents the Screen & Social The Extended Movie Experience. See 'Captain America: Brave New World' in theaters with Mostly Superheroes Friday February 21st at Alamo Drafthouse St. Louis in the City Foundry and get more for your movie ticket.  Meetup starts at 5pm - movie at 6pm. Buy your tickets for the 6pm show and you are automatically entered for a chance to win prizes from City Winery STL, Alamo Drafthouse Cinema, Planet Score Records, The Voltron Store, 4 Hands Brewing Company, and more! Plus share your movie review and get featured on Mostly Superheroes the podcast and help us spread awareness for Team Jakey: End The Stigma and the Huntington's Disease Society of America Missouri.  Buy Your Tickets Now

In this episode of the Brain & Life podcast, author Tanita Allen joins Dr. Katy Peters to discuss her experience with Huntington's Disease and how it inspired her to write her book We Exist. Tanita shares about the rocky diagnosis process, how she manages day-to-day symptoms, and why she was called to share her story in a book. Dr. Peters is then joined by Dr. Katie Moore, Assistant Professor of Neurology and Associate Director of the Neurology Residency Program at Duke University Medical Center. Dr. Moore explains what Huntington's Disease is, dispels some diagnostic myths, and what patients and caregivers can look forward to in the future.   We invite you to participate in our listener survey! By participating in the brief survey, you will have the opportunity to enter your name and email address for a chance to win one of five $100 Amazon gift cards.   Additional Resources We Exist by Tanita Allen What is Huntington's Disease? Promising Therapies May Help Huntington's Disease Huntington's Disease Society of America   Other Brain & Life Episodes on this Topic Rare Thoughts on a Rarer Neurologic Condition We Are Brave Together with Jessica Patay Author, Speaker Jackie Stebbins on Rebuilding Her Life After Autoimmune Encephalitis   We want to hear from you! Have a question or want to hear a topic featured on the Brain & Life Podcast? ·       Record a voicemail at 612-928-6206 ·       Email us at BLpodcast@brainandlife.org   Social Media:   Guests: Tanita Allen @tanitaallen234; Dr. Katie Moore @dukeneurores Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD

Hey everyone, it's Austin Young here. Today, we've got a special guest: Chris Cutler from the legendary punk rock band Fat By The Gallon. After a decade-long wait, these guys finally dropped a record that's been worth the hype.We're breaking down the studio sessions, the challenges they faced, and the wild ride that led to this album's release. But that's not all. Chris also opens up about his personal battle with Huntington's Disease and how it's shaped his life and music. With a career that includes opening for punk rock giants like NOFX, Big D and the Kids Table, and Less Than Jake, Chris's story is one of resilience, passion, and the raw power of music.But wait, there's more! Chris also shares his expert advice on how up-and-coming bands can build a tour in Europe. He's been around the block a few times, so he knows a thing or two about navigating the European music scene.So sit back, relax, and let's get into it with Chris Cutler on The Austin Young Show.Please consider making a donation on Chris behalf to Huntington's Disease Society of America. DONATE HERE Music By: Fat By The Gallon - GI Joe Was Full Of S@*t, Man! To The Chopper and Letting GoThe Two Watts - Russian Warship *DISCLAIMER: I hereby declare that I do not own the rights to this music/song. All rights belong to the owner. No Copyright Infringement Intended. All bands have given permission to use their music.*

It takes expertise across many specialties to earn a designation as a Center of Excellence from the Huntington's Disease Society of America. UConn Health has earned that designation. From UConn Health's Huntington's Disease Program, Dr. Shakaib Khan, medical director, and nurse practitioner Robin Zingales-Browne describe what goes into providing care and support for those with Huntington's Disease and their families. Plus, learn about Huntington's Disease Education Day, taking place at UConn Health Oct. 26. (Robin Zingales-Browne, Dr. Shakaib Khan, Carolyn Pennington, Chris DeFrancesco, October 2024). 2024 Huntington's Disease Education Day, Oct. 26, 2024 https://connecticut.hdsa.org/events/2024-huntington-s-disease-education-day-farmington-ct Huntington's Disease Center of Excellence in Connecticut Designated at UConn Health https://today.uconn.edu/2024/03/huntingtons-disease-center-of-excellence-in-connecticut-designated-at-uconn-health/ Enroll-HD Study https://health.uconn.edu/psychiatry/research/research-studies/#fl-accordion-606dfb3f99d42-tab-4 Huntington's Disease Program at UConn Health https://health.uconn.edu/psychiatry/areas-of-care/adult/huntingtons-disease-program/ Dr. Shakaib Khan http://health.uconn.edu/find-a-provider/physician/Khan-Shakaib Robin Zingales-Browne http://health.uconn.edu/find-a-provider/physician/Browne-Robin

Dr. Juebin Huang, MD(Neurologist - UMMC) on their upcoming Mississippi Huntington's Disease Society of America HD Education Day, and Kelly Bennett(Multimedia Journalist - SuperTalk MS News) gives you a look at the Good Things from the headlines.

Deadpool & Wolverine Ronnie's Marcus Cinema! Sunday July 28th 9:15am coffee/donuts - Prizes at 9:30am - Movie at 10am Come hang out with friends, fellow nerds, support our podcast and help lift-up the Huntington's Disease Society of America. Your $25 ticket gets you coffee & donuts, a seat in our private theater, popcorn & a drink, & a chance to win prizes. Bookmark this page and stay tuned for more updates. Complete the form linked below to sign up to get tickets. Our team will contact you with next steps. Limited seating. ⁠https://mostlysuperheroes.com/screen-socials/2024 ⁠ ©2024 Carrogan Ventures, LLC

Huntington's Disease (HD) Fast Facts (via Honestly HD): More than 30,000 Americans are living with HD. Everyone has two huntingtin (HTT) genes, one from each parent. Huntington's disease develops whenone of those genes carries the mutation. In some families, appearance of symptoms happens earlier and earlier with each generation. The symptoms of HD usually appear between the ages of 30-50. Join us this week as we discuss the cause, stages, symptoms, and symptom management options of the disease, as well as how Huntington's and Parkinson's can often display overlap in these areas. SHOW NOTES Julie's Uplifting Story: Be too much via Conscious Reminder Beyond Inga's Uplifting Story: Switch the Channel Articles: Huntington's disease overview | Huntington's Disease Society of America | Huntington's Disease vs. Parkinson's Disease: What Are the Differences? Watch the video: https://youtu.be/KtuU_w9qia4 FOLLOW INGA + JULIE! Connect with Inga on LinkedIn: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.linkedin.com/in/inga-lake-4857301b8/⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Connect with Julie on LinkedIn: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.linkedin.com/in/julie-brubaker-3a89b2114/⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Follow Caregiven on Instagram: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.instagram.com/thecaregivenpodcast/⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Follow Caregiven on TikTok: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.tiktok.com/@thecaregivenpodcast?lang=en⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Subscribe to the Caregiven YouTube Channel: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.youtube.com/channel/UChtq-gS4yCWGE5UFnrU8OAA⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Follow EPAGA Home Care on Facebook: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.facebook.com/EPAGAHomeCare⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Join the Care and Share Facebook Group: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.facebook.com/groups/715609402176814⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Follow EPAGA Home Care on Instagram: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.instagram.com/epagahomecare/⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Follow EPAGA Home Care on LinkedIn: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.linkedin.com/company/epaga-home-care⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Visit EPAGA's Website for more articles about home care: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.epagahomecare.com/articles⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Interested in opening your own EPAGA Home Care? Check out our Franchise Opportunities: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.epagahomecarefranchise.com

We are exploring Mast Cell diseases with The Mast Cell Disease Society Executive Director, Jessica Fraser, as we learn about this organization, its mission, and in-depth resources available for everyone! Resources to keep you in the know from the podcast:Mast Cell Disease Society What Are Mast Cell Diseases?Mast Cell Disease Society Patient Resource GuideEmergency Medical Alert CardMast Cell Disease Society Emergency Room ResourcesSupport GroupsNutrition FAQFind A PhysicianClinical TrialsPatient Assistance ProgramsYou can find the FAACT Roundtable Podcast on Pandora, Apple Podcast, Spotify, Google Podcast, Stitcher, iHeart Radio, Podcast Chaser, Deezer, and Listen Notes.Follow us on Facebook, X, Instagram, Threads, LinkedIn, Pinterest, TikTok, and YouTube.Sponsored by: Blueprint MedicinesThanks for listening! FAACT invites you to discover more exciting food allergy resources at FoodAllergyAwareness.org!

Jim Field visits with Andrea Bauer of the Iowa Chapter of the Huntington's Disease Society of America about the mission of the organization and a fund raising "Putt Out Mini Golf" event on Saturday, July 29, 2023 from 10:00 am to 2:00 pm at the Sunnyside Range in Atlantic.

Charlene Smith bio: "I am a project scientist in the lab of Dr Leslie Thompson at UC Irvine. I have worked here for 8 years studying Huntington's disease using HD patient derived stem cells. During that time I have received funding from the Hereditary Disease Foundation and the Huntington's Disease Society of America. I graduated in 2015 with my PhD from Cardiff University and wanted to pursue research in Huntington's disease." Gong-Her Wu bio: "In 2015, I proudly earned my Ph.D. from Tsing Hua University, marking a significant milestone in my academic journey. Subsequently, I had the privilege of joining the esteemed lab of Dr. Wah Chiu, where I expanded my expertise further and contributed to cutting-edge research. From 2019 to 2023, I was fortunate to receive support from the Hereditary Disease Foundation (HDF), a valuable recognition of my work's importance and potential impact. Now, I am a research scientist at Stanford University, working in the esteemed lab of Dr. Wah Chiu. Over the past six years, my focus has been on advancing the field of cryo-electron tomography (cryo-ET) and its application in studying Huntington's disease. I have employed various model systems to achieve this, including yeast, induced pluripotent stem cells (iPSCs), primary neurons, C. elegans, and mouse brains." Link to research: https://www.nature.com/articles/s41467-023-36096-w Link to Hereditary Disease Foundation: https://www.hdfoundation.org/

Julian Rankin(Exec Dir - Walter Anderson Museum of Art) breaks down all the wonderful things you can experience at the museum, and Louise Vetter(President/CEO - Huntington's Disease Society of America, Inc.) on raising awareness and finding a cure.

Julian Rankin(Exec Dir - Walter Anderson Museum of Art) breaks down all the wonderful things you can experience at the museum, and Louise Vetter(President/CEO - Huntington

 Are you looking for a fantastic side gig while doing medical practice? Join Andrew Tisser and Dr. Amy Fogelman as they discuss how to get started in medical expert consulting. Dr. Amy Fogelman owns a company that matches lawyers with the right medical experts for their cases. She shares that a medical expert acts as an educator and should remain unbiased no matter which side hired them. She believes that the keys to getting cases are confidence and doing an excellent job. Tune in to learn more!In this episode, you will learn:·        How did she get started in the expert witness world?·        Can any specialty do expert witness work?·        The goal of being an expert witness·        Her course on performing medical expert work·        The type of physician that should not get involved in this kind of work·        Tips for early career physiciansAbout Dr. Amy Fogelman:Amy G. Fogelman, MD is Board Certified in Internal Medicine with 17 years of experience seeing patients at ambulatory practices in the Boston area. She graduated with a BA in Biology from Wesleyan University in Connecticut and MD from Boston University School of Medicine. She completed her Internship and Residency at Harvard Medical School's Beth Israel Deaconess Medical Center in Boston and a Chief Residency in Primary Care at the Veterans Affairs Hospital in West Roxbury. She has been awarded prizes in clinical excellence and leadership at Massachusetts General Hospital (MGH).Amy's career has been notable for her advocacy efforts. She was the Executive Director of Communications for the COVID-19 Action Coalition of Massachusetts. She now serves on the Board of the Huntington's Disease Society of America's Massachusetts/Rhode Island Chapter. Amy also volunteers as a Member for the Juvenile Substance Abuse and Mental Health Task Force at the Norfolk County Sheriff's Office. Amy also serves in several leadership positions at the Massachusetts Medical Society.Amy is an educator who can communicate about complex medical-legal issues in easy to understand terms. She loves teaching patients, trainees, attorneys, juries and other Medical Experts. She sees patients at Fenway Health in Boston.Connect with Dr. Amy Fogelman:Website : https://amyfogelmanmd.com/                https://medlawconsulting.com/LinkedIn: https://www.linkedin.com/in/amyfogelmanmd/Facebook: https://www.facebook.com/amyfogelmanmd/Instagram: https://www.instagram.com/amyfogelmanmd/?hl=en Connect with Talk2Medoc on:Website:          https://www.andrewtisserdo.com/LinkedIn:         https://www.linkedin.com/in/andrewtisserdo/Facebook:       https://www.facebook.com/andrew.tisserInstagram:       https://www.instagram.com/talk2medoc_llc/Twitter:                        https://twitter.com/Talk2MeDocYouTube:        https://www.youtube.com/channel/UC0O_Sf3aYLavYaJ_hg7bM8g

Stephanie Johnson and Taylor Vining with Don Wilhelm's talk about their upcoming 5K Color Run & Car Show on Saturday, Sept. 24. The event has raised thousands of dollars for the Huntington's Disease Society of America in the past 11 years.

Pete Rizzo spoke with President/CEO Louise Vetter about the Long Island Team Hope Walk taking place on September 18th at Wantagh Park as well as how to spot the signs for Huntington's Disease.

If you grew up in the United States, you are most likely familiar with the song “This Land is Your Land”, one of the most famous American folk songs. Though it has been rerecorded and performed by many famous artists, you may not know the original writer and performer, Woody Guthrie. Woody Guthrie was born in 1912 and was, and still is, one of the most influential figures American folk music. He traveled across the U.S. for much of his life, lived through the Great Depression, the Dust Bowl, and World War II, and settled down in New York in the early 1950s. During this time, his health began to deteriorate, and he was hospitalized many times and was misdiagnosed with things from alcoholism to schizophrenia. In 1954, upon his admission to psychiatric hospital, he finally received the correct diagnosis: Huntington's Disease (HD). Sadly, Guthrie passed from complications of HD in 1967, but following his death, his ex-wife Marjorie Mazia founded the Huntington's Disease Society of America, and helped bring Huntington's Disease and the importance of research on the disease to the public eye. This publicity was well needed, as HD was not well known at the time and commonly misdiagnosed (such as the case of Guthrie's mother, who was institutionalized when he was 14, but posthumously diagnosed) (Woody Guthrie Official Website, n.d.). Though today there is a lot more information on the disease, there is still a long way to go to curing this fatal disease. Recent research has been looking towards the field of epigenetics to learn more about HD and possible treatments. But first, it is important to fully understand Huntington's disease and what causes it.

Don't sweat the small stuff and focus on doing your best, even in the worst case scenario. In this episode, we are joined with positive energy from Dr. Deb Sloboda who is a researcher, professor at McMaster University, and one of the founding Co-Presidents of the Developmental Origins of Health and Disease Society of Canada. Her work involves understanding the impact of early life adversity on the mother, and the developing fetus and how fetal adaptations to adversity influence the risk of chronic disease later in life. Join us in a discussion about work-life integration, the incorporation of acts of service and fostering healthy relationships to promote well-being.

Huntington's disease is a rare genetic neurological disorder that can impact everything from a person's ability to move to their memory and can cause psychiatric disorders, like depression.  For many, it's fatal, and there's a 50% chance that the biological child of a parent with Huntington's will inherit the disease. Yet, there is still hope. Vanderbilt University Medical Center is home to one of the nation's leading clinics for Huntington's disease. It this hour, we'll hear from Tennesseans with Huntington's, their families and doctors to understand what it means to live with the disease and how they made tough decisions when it comes to getting tested and having children. But up first, WNXP Editorial Director Jewly Hight talks artist of the month — and Julia Gomez's record of the week. Guests Jewly Hight, WNXP editorial director Eva Angelina Romero, Huntington's Disease Society of America – Tennessee chapter president  Chris Brown, lives with Huntington's and is an advocate for peer support and research Amy Abbott, wife of musician Jody Abbott Dr. Daniel Claassen, neurologist and director of Vanderbilt University Medical Center's interdisciplinary Huntington's Disease and Chorea Clinic

Today we interview Louise Vetter, President and CEO of Huntington's Disease Society of America, about the work they do for those impacted by Huntington's Disease. We'll discuss the complex symptoms and unique challenges surrounding this disease, the ways in which HDSA helps patients, their families, and caregivers, and the research grants and legislation HDSA is supporting to bring progress and relief. To support HDSA and discover more ways to help, visit: https://hdsa.org/To learn more about the show, view transcripts, and more visit:https://www.actsofimpact.comSpecial thanks to Louise and the HDSA team. Music by Alex Grohls.

Description: In this episode, we highlight the winners of our platform award at CSM 2022. Lori Quinn talks to Chris Burke about her team's research on long-term PT follow up to promote exercise in people with HD. They discuss findings related to feasibility, participant engagement, and outcomes related to function, disease progress and physical activity during the year-long study. They also discuss innovative models to provide care for and do research with people with HD, and unique challenges in the HD population. Whether you missed it at CSM or are looking for bonus clinical insights beyond the platform, this is definitely worth a listen!  The Degenerative Disease Special Interest Group is part of the Academy of Neurologic Physical Therapy – www.neuropt.org   Guest Information:   Lori Quinn, PT, EdD  Associate Professor of Movement Science & Kinesiology  Teachers College, Columbia University  Related Information/Links   Huntington's Disease Society of America (HDSA): https://hdsa.org/  European HD Network: http://www.ehdn.org/   ENGAGE-HD workbook: http://www.ehdn.org/wp-content/uploads/2020/07/ENGAGE-HD-Physical-Activity-Workbook-v2-UK.pdf   PT/Exercise Resources: http://www.ehdn.org/physiotherapy-wg/#physioresources   Enroll-HD: https://www.enroll-hd.org/   HD PRO-TRIAD: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3990832/ (Carlozzi NE, Victorson D, Sung V, et al. HD-PRO-TRIAD™ Validation: A Patient-reported Instrument for the Symptom Triad of Huntington's Disease. Tremor Other Hyperkinet Mov (N Y). 2014;4:223. Published 2014 Apr 14. doi:10.7916/D8PN93NZ)  Unified Huntington's Disease Rating Scale (UHDRS) https://www.sralab.org/rehabilitation-measures/unified-huntingtons-disease-rating-scale-uhdrs-tm 

May Is HD Awareness month, and our guests for this episode were Drs. Elton and Laquita Higgs. The couple adopted a little girl many years ago - who developed Huntington's Disease (HD). One of the most horrific diseases on the planet, HD eventually cost their daughter her life - but not before she had a daughter who also developed the genetic (and terminal) illness. Listen to their inspiring and insightful story - from their book, SHATTERED DREAMS - BUT HOPE: Encouragement for Caregivers of Huntington's Disease and Other Progressive Illnesses   For more information on HD, please visit HDSA.org (The Huntington's Disease Society of America)

On The Hockey Show, Dave talked with Director of Marketing & Communications for the Huntington's Disease Society of America, Chris Consentino and Stanley Cup champion and Huntington's disease advocate Jake Dowell about today's HDSA Hockey Classic. Learn more about your ad choices. Visit megaphone.fm/adchoices

Heather Thurgood(Office/Traffic Mgr - SuperTalk SW MS) & Louise Vetter(Pres/CEO - Huntington's Disease Society of America) join the discussion with May being HD Awareness Month, and we have some fun on this Tasty Tuesday presented by Prime Shrimp!

Dr. Javier Birchenall, associate professor of Economics at UC Santa Barbara, discussed the impact of disease for long-run economic development, the interaction between population and the economy, and the labor market. Series: "GRIT Talks" [Public Affairs] [Health and Medicine] [Show ID: 37870]

Dr. Javier Birchenall, associate professor of Economics at UC Santa Barbara, discussed the impact of disease for long-run economic development, the interaction between population and the economy, and the labor market. Series: "GRIT Talks" [Public Affairs] [Health and Medicine] [Show ID: 37870]

Dr. Javier Birchenall, associate professor of Economics at UC Santa Barbara, discussed the impact of disease for long-run economic development, the interaction between population and the economy, and the labor market. Series: "GRIT Talks" [Public Affairs] [Health and Medicine] [Show ID: 37870]

Dr. Javier Birchenall, associate professor of Economics at UC Santa Barbara, discussed the impact of disease for long-run economic development, the interaction between population and the economy, and the labor market. Series: "GRIT Talks" [Public Affairs] [Health and Medicine] [Show ID: 37870]

Dr. Javier Birchenall, associate professor of Economics at UC Santa Barbara, discussed the impact of disease for long-run economic development, the interaction between population and the economy, and the labor market. Series: "GRIT Talks" [Public Affairs] [Health and Medicine] [Show ID: 37870]

Chucky Quartarola's wife suffers from Huntington's Disease. A debilitating disease similar to ALS, there is no cure and few people know much about it. His hope is that this book will raise awareness and increase donations to the Huntington's Disease Society of America for research. He is available to speak at organizations and community groups as part of his personal campaign to make a difference. --- Support this podcast: https://anchor.fm/susan-sherayko/support

What's the placenta? Some people think of it as a bag filled with fluid that protects the fetus inside from accidental blows, or a structure that sends maternal nutrients to the fetus while removing its waste products. Well, it's actually much more than this. When we may think that the placenta is protective, it can also create detrimental effects to the fetus - effects that can be lifelong. In fact, the placenta is a complex organ on its own and we've only recently been discovering some of the things that the placenta really does, and also what it can't do. Every new person that has arrived on this planet developed in a placenta, so to ensure the health and wellbeing of future generations, understanding what goes on with the placenta has become more critical. Today's guest is a leader in the field of placental biology. Dr. Cheryl Rosenfeld is professor of biomedical sciences and her cutting edge research on the multiple roles of the placenta and fetal development provides critical guidance for prenatal maternal lifestyle and care.    Key Takeaways: The placenta does have some ability to metabolize things, and it does offer some buffering capacity to the fetus. The placenta is an endocrine organ. It also produces neurotransmitters.  Endocrine disrupters can be found in household items and everything around us. Understanding the green chemistry movement can help us lead a healthy life style.    "Even though we can't really, completely, eliminate our exposure to environmental chemicals. We can try to offset it by living with good healthy practices." —  Dr. Cheryl Rosenfeld   Connect with Dr. Cheryl Rosenfeld: Professional Bio: https://biomed.missouri.edu/cheryl-s-rosenfeld-phd-dvm/  The United States Developmental Origins of Health and Disease Society:  https://www.usdohad.org/    Connect with Therese: Website:   www.criticallyspeaking.net Twitter: @CritiSpeak Email: theresemarkow@criticallyspeaking.net     Audio production by Turnkey Podcast Productions. You're the expert. Your podcast will prove it.  

This was from Our Redeemer Lutheran Church in Sioux Falls, SD, presented by Pastor Ryan Drevlow on December 4, 2021. For full worship services, check out our YouTube page at: https://www.youtube.com/c/OurRedeemerLutheranChurchLCMSSiouxFallsSD Bible Readings: Isaiah 25:6-9 Psalm 121 Philippians 4:4-9 John 10:11-16 Corrine Ludwig's obituary is available at: https://www.georgeboom.com/obituary/corrine-ludwig Corrine Ann Albright was born on June 25, 1936 to John and Flora (Klinger) Albright in Sioux Falls, South Dakota. She would attend Emerson Grade School and then Washington High School, graduating with the Class of 1954. Later in life, Corrine went on to attend the University of South Dakota, proudly graduating in 1986, at the age of 50, with a degree in social work. Corrine was united in marriage with Charles William Ludwig on June 9, 1957 in Sioux Falls. They were blessed with three children, Myrth, Brian, and Diane. Corrine and Charles would reside on a farm southeast of Alcester, SD for forty years. In 1997, they moved to Sioux Falls. Being active in church was important to Corrine and Charles. She taught Sunday School and confirmation classes and throughout her life, she was active in bible study groups. Corrine was a member of Our Redeemer Lutheran Church. Besides the busy life of wife and mother, Corrine became a journalist with her articles published in several local newspapers including the Alcester Union and Argus Leader. Her specialty was human interest stories about people and their lives, hobbies, and activities. Corrine also worked as church secretary for Nathaniel Lutheran in Alcester for several years. After Corrine graduated from University of South Dakota, she worked as a social worker at several local nursing homes. Through a friend, Corrine became active with Huntington's Disease Society of America and was on the board as a social worker. Corrine loved word games like Scrabble and Words with Friends. She enjoyed playing board or card games as an activity during family visits. Reading was one of her favorite pastimes and library trips were a must throughout her life. She looked forward to basketball season and could again watch her favorite teams, Duke and San Antonio Spurs. Family and friends were so important to Corrine and her caring nature was evident to all who met her. She had a remarkable ability to ask questions, truly listen to what people shared, and always had a kind and encouraging response. Grateful for having shared her life are her children, Myrth Perry of Sioux Falls, Brian (Julie) Ludwig of Milbank, SD, and Diane (Larry) Watson of Elkhorn, NE; grandchildren, Jonathan (Ashley) Ludwig, Megan Ludwig, David Watson, Jenny Watson, Dan Watson, and McKenzie Perry; and great-grandchildren, Myles and Kellen. She was preceded in death by her husband, Charles (October 26, 2009); and parents, John and Flora. The family requests memorials be sent to the Sioux Falls Lutheran School, 6715 S. Boe Lane, Sioux Falls, SD 57108.

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 met Dr. Wild). He has authored 7 book chapters and over 80 peer-reviewed publications. He serves on the Medical Advisory Panel of the Huntington's Disease Association, the Association of British Neurologists Neurogenetics Advisory Panel, and the Translational Neurology Panel of the European Academy of Neurology. He is the Associate Editor of the Journal of Huntington's Disease and advises the steering committee to the UK All-Party Parliamentary Group on Huntington's disease. He is the co-Lead Facilitator of the European Huntington's Disease Network‘s Biomarkers Working Group. For more information about HDClarity, please visit www.hdclarity.net

Louise Vetter is the Chief Executive Officer of the Huntington's Disease Society of America (HDSA), the largest public not-for-profit organization devoted to the fight against Huntington's disease (HD). Since joining HDSA in 2009, she has led the expansion of the Society's reach with new programs and initiatives to strengthen the web of support for the HD community, advocate for better access to care for those affected by the disease, improve physician understanding of HD, and support scientific exploration to bring new treatments to HD families. Ms. Vetter serves as Secretary of the International Huntington's Association and is Treasurer of the Board of Directors of the American Brain Coalition. Additionally, she is an active member of the National Health Council and an editorial advisor to the Rare Disease Report. Before coming to HDSA, Ms. Vetter spent nearly 10 years leading the American Lung Association of New York where she advocated for families living with lung diseases, like lung cancer, asthma, cystic fibrosis, emphysema and more, to get the care and support they needed. Earlier in her career, she led national health education and public relations campaigns for Fleishman Hillard International Communications with emphasis on improving the patient-physician dialogue. At the heart of her experience is a firm passion for helping people face health challenges head on, always with dignity, understanding and hope. To join PatientsLikeMe, please visit www.hdsa.org/plm  

In this episode we sit down with the winners of the two Heroclix for Huntingtons events, Adam Friedman (silver age) and Matthew Ventura (modern age). We discuss both events and our thoughts on the modern environment going forward. Starring Jay, Devin, Adam Friedman, and Matthew Ventura. You can donate directly to the Huntington's Disease Society of America here: https://hdsa.org/heroclix You can find the event details for Scott Porter's HDSA event here: https://heroclixforhuntingtons.com/ Our Patreon: https://www.patreon.com/jsaclix If you need to use Podbean's services (hosting or ads), you can use our affiliate links to get one month free/free ad credit, and support us! Affiliate link for unlimited hosting plan https://www.podbean.com/jsaclix Affiliate link for business hosting plan https://www.podbean.com/pro/jsaclix Affiliate link for advertising https://sponsorship.podbean.com/jsaclix Have you heard of http://ClixNexus.com? Clixnexus.com Patreon: https://www.patreon.com/clixnexus Dishin' Up Clix Patreon: https://www.patreon.com/DishinUpClix Happy Little Heroclix Patreon: https://www.patreon.com/happylittleheroclix Check out some Roll20 tutorials here: Happy Little Heroclix - https://www.youtube.com/watch?v=wPJBi-PNiW4 Emily - http://withemily.ca/roll20-for-heroclix-tutorial-set-up-play-tips/

In this episode we discuss the Scott Porter Heroclix for Huntingtons Silver and modern events. Starring Jay, Devin, and Josh Essex. You can donate directly to the Huntington's Disease Society of America here: https://hdsa.org/heroclix You can find the event details for Scott Porter's HDSA event here: https://heroclixforhuntingtons.com/ Our Patreon: https://www.patreon.com/jsaclix If you need to use Podbean's services (hosting or ads), you can use our affiliate links to get one month free/free ad credit, and support us! Affiliate link for unlimited hosting plan https://www.podbean.com/jsaclix Affiliate link for business hosting plan https://www.podbean.com/pro/jsaclix Affiliate link for advertising https://sponsorship.podbean.com/jsaclix Have you heard of http://ClixNexus.com? Clixnexus.com Patreon: https://www.patreon.com/clixnexus Dishin' Up Clix Patreon: https://www.patreon.com/DishinUpClix Happy Little Heroclix Patreon: https://www.patreon.com/happylittleheroclix Check out some Roll20 tutorials here: Happy Little Heroclix - https://www.youtube.com/watch?v=wPJBi-PNiW4 Emily - http://withemily.ca/roll20-for-heroclix-tutorial-set-up-play-tips/

In this episode we discuss the comprehensive rules supplement and focus on the changes. Starring Jay, Devin, and Chad. You can donate directly to the Huntington's Disease Society of America here: https://hdsa.org/heroclix You can find the event details for Scott Porter's HDSA event here: https://heroclixforhuntingtons.com/ Our Patreon: https://www.patreon.com/jsaclix If you need to use Podbean's services (hosting or ads), you can use our affiliate links to get one month free/free ad credit, and support us! Affiliate link for unlimited hosting plan https://www.podbean.com/jsaclix Affiliate link for business hosting plan https://www.podbean.com/pro/jsaclix Affiliate link for advertising https://sponsorship.podbean.com/jsaclix Have you heard of http://ClixNexus.com? Clixnexus.com Patreon: https://www.patreon.com/clixnexus Dishin' Up Clix Patreon: https://www.patreon.com/DishinUpClix Happy Little Heroclix Patreon: https://www.patreon.com/happylittleheroclix Check out some Roll20 tutorials here: Happy Little Heroclix - https://www.youtube.com/watch?v=wPJBi-PNiW4 Emily - http://withemily.ca/roll20-for-heroclix-tutorial-set-up-play-tips/

Jennifer Simpson (Assistant Director of Youth & Community Services - Huntington's Disease Society of America) joins the conversation as May is Huntington's Disease Awareness Month to break down the work being done to help those living with Huntington's and why you should be proud of your fellow Mississippians leading the fight!, and then Hank Burdine(Board member - Mississippi levee commission) hops on the phone to inform and entertain as only he can as the discussion turns to the topic of the progress on the pumps that will help Mississippians under water from flooding in the Mississippi Delta.

Dr. Jeanine Cook-Garard and Gina Peter learn all about Huntington’s Disease, a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. Their guest is Gia Mannone, the Huntington’s Disease Society of America’s National Youth Alliance Youth Services & Recruitment Chair, to help us better understand this disease and how her organization is working to help patients and their families who suffer from it.

This week's episode features Ashley Pesi, a social worker at the HDSA National Youth Alliance, a PhD student, a mom, and a rare disease patient! Both she and her mom have Huntington's Disease, which is a genetic, neurodegenerative disease that is said to be a combination of ALS, Alzheimer's, and Parkinson's. Ashley discusses the reality of never really accepting a diagnosis, the welcoming embrace of the HD community, her and her mom's diagnosis stories, family planning, and much more! Be sure to subscribe to R is for Rare on Apple Podcasts, Spotify, or wherever you get your podcasts! Leave a review letting me know what you think about the podcast, and share the podcast on social media (you can post episodes from Spotify to your Instagram story)! Huntington's Disease Society of America - https://hdsa.org HDSA's National Youth Alliance - http://nya.hdsa.org Follow me on Instagram - @risforrarepodcast --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app --- Send in a voice message: https://anchor.fm/annie-watson/message

Today's bonus episode is all about Rare Disease Day, which is celebrated on the last day of February each year! So, Happy Rare Disease Day! I go through the history of this special day, what some organizations are doing to celebrate, and how you can participate in this amazing day! Share your story on social media with #RareDiseaseDay and #WearYourStripes! Be sure to subscribe to R is for Rare on Apple Podcasts, Spotify, or wherever you get your podcasts! And be sure to leave a review and let me know what you think of the podcast! Follow me on Instagram: @risforrarepodcast Questions? Email me - risforrarepodcast@gmail.com Anything mentioned in the episode / Resources used in the research for this episode: National Organization for Rare Disorders (NORD) - https://rarediseases.org NORD's Rare Disease Database - https://rarediseases.org/for-patients-and-families/information-resources/rare-disease-information/ EURORDIS (the NORD's sister organization based in Europe) - https://www.eurordis.org Rare Disease Day website - https://www.rarediseaseday.org Rare Disease Day at the National Institute of Health (NIH) - https://ncats.nih.gov/news/events/rdd Narcolepsy Network - https://narcolepsynetwork.org Our Odyssey - https://ourodyssey.org Global Genes - https://globalgenes.org EveryLife Foundation - https://everylifefoundation.org Huntington's Disease Society of America - https://hdsa.org AllStripes - https://www.allstripes.com The Boomer Esiason Foundation - https://www.esiason.org The Ehlers-Danlos Society - https://www.ehlers-danlos.com Individuals with Disabilities Education Act (IDEA) - https://sites.ed.gov/idea/ Americans with Disabilities Act (ADA) - https://www.dol.gov/general/topic/disability/ada Orphan Drug Act - https://www.fda.gov/industry/designating-orphan-product-drugs-and-biological-products/orphan-drug-act-relevant-excerpts --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app --- Send in a voice message: https://anchor.fm/annie-watson/message

This week's interview is with Allison Bartlett, who works as the manager of disability programs at Huntington's Disease Society of America (or HDSA) and is a disability attorney. She goes through the same step-by-step process of applying for Social Security disability that she goes through with her clients, as well as elaborating on the legal challenges that loved ones face with HD. We also discuss the importance of advocacy, both for yourself and in regards to pushing for legislatures! Huntington's Disease Society of America — hdsa.org Huntington's Disease Parity Act — hdsa.org/takeaction Genetic Information Nondiscrimination Act of 2008 (GINA) — https://www.congress.gov/bill/110th-congress/house-bill/493 Difference between Medicare and Medicaid — https://www.hhs.gov/answers/medicare-and-medicaid/what-is-the-difference-between-medicare-medicaid/index.html Be sure to subscribe to R is for Rare on Apple Podcasts, Spotify, Overcast, or wherever you get your podcasts! Leave a review to let me know what you think of the podcast! Follow me on Instagram - @risforrarepodcast Questions? Want to be on the podcast? Email me - risforrarepodcast@gmail.com --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app --- Send in a voice message: https://anchor.fm/annie-watson/message

This week we're joined by Maggie Milnamow, Vice President Sales Operations at The New York Times. Hear what she's most proud of and how she's driving change in her industry. Learn more about the Huntington's Disease Society of America's New York Chapter, of which Maggie is a board member, at http://greaterny.hdsa.org/about/about-the-nyc-chapter.

Blessing and Imran talk about the morning of preorders, Fortnite crossing over with Rocket League, and Greg Miller being in a game? 00:00:00 - Start 00:06:47 - Housekeeping RTX CONTINUES: This Wednesday at 1pm Pacific time catch Greg, Tim, and Blessing on the Superhero Smack Talk panel where we decide once and for all who’s superior between Marvel and DC. That’s happening live on Roosterteeth.com Would you like to have a Happy Half Hour with Greg and Friday Night Lights’ Scott Porter? Then, head to kindafunny.com/teamporter! Scott’s raising money to fight Huntington’s Disease, and he and Greg have put up a paint can-drinking Zoom call for the charity auction. There’s also a ton of video game stuff, so check out everything benefiting the Huntington's Disease Society of America! kindafunny.com/teamporter! The Roper Report - 00:08:09 - As expected: Xbox Series X and S Preorders Seemingly Crashed Retailer Websites 00:12:26 - “What can we learn from this and how should the "perfect pre-order" system work in the future?” - BenjiB0P 00:14:08 - “So about that cheeky tweet from the Xbox account regarding pre orders from last week…” - Oliver 00:23:19 - Marvel's Spider-Man PS4 Save Files Won't Work With The PS5 Remaster 00:30:55 - Rocket League and Fortnite collide in crossover events starting this weekend 00:36:05 - Thomas Was Alone Creator Announces a Solitaire Game With a Story Campaign 00:39:02 - Manticore, A Roblox For Older Gamers, Raises $15 Million In New Funding Led By Epic 00:42:56 - Out today 00:46:37 - Logitech 00:47:50 - Klarna 00:49:00 - Hello Fresh Reader mail - 00:50:42 - “What are your earliest and/or fondest console memories?” - Langiam 00:59:26 - You‘re Wrong 01:03:52 - Post Show Tomorrow’s Hosts: Greg and Whitta

Microsoft has bought ZeniMax media bringing Bethesda and all their studios to the Xbox family. Blessing and Tim discuss this huge move and more. Time Stamps - 00:00:00 - Start 00:01:24 - Housekeeping RTX CONTINUES: This Wednesday at 1pm Pacific time catch Greg, Tim, and Blessing on the Superhero Smack Talk panel where we decide once and for all who’s superior between Marvel and DC. That’s happening live on Roosterteeth.com Would you like to have a Happy Half Hour with Greg and Friday Night Lights’ Scott Porter? Then, head to kindafunny.com/teamporter! Scott’s raising money to fight Huntington’s Disease, and he and Greg have put up a paint can-drinking Zoom call for the charity auction. There’s also a ton of video game stuff, so check out everything benefiting the Huntington's Disease Society of America! kindafunny.com/teamporter! Thank you to our Patreon Producers: Tom Bock, Mohammed Mohammed, & Black Jack The Roper Report - 00:03:34 - Microsoft Acquires Bethesda - Joe Skrebels @ IGN 00:14:00 - Do you guys think this means Elder Scrolls 6 and Fallout 5 will be Xbox exclusives? - Best Friends Q:Wispa 00:19:40 - Is it fair to say that Microsoft is indeed playing Sony's game? - Best Friends Q:Marc Starvajji 00:24:35 - Is this Microsoft saying “no more third party” and starting a bidding war over that landscape - Best Friends Q:Andrew Dramis 00:34:05 - Based on how PlayStation was being dragged just a few weeks ago about being "consumer-friendly," is today's move by Microsoft enough to start those same conversations? - Best Friends Q:DrummerDuck09 00:39:18 - Hades is a huge success 00:41:57 - PlayStation Apologizes for the pre-order debacle - @PlayStation on Twitter 00:49:10 - Logitech 00:50:20 - KLARNA 00:51:25 - Hello Fresh 00:53:20 - Devs behind Skullgirls and Indivisible have formed a new games studio - press release 00:57:21 - You can now stream your Xbox One games to your Android phone for free - Tom Warren @ The Verge 00:58:30 - Out today 00:59:40 - Squad Up:Tyler Wallis(PS4) - Tyler_Dur_Den_ 01:00:13 - You‘re Wrong Tomorrow’s Hosts:Bless and Imran

00:00 Paula Lintz with the Huntington's Disease Society of Central Ohio. 12:00 Courtesy of our sister station, WBNS 10-TV, Tracy Townsend provides an update on efforts to repeal HB 6 at the Statehouse, presents comments from local doctors about work on a coronavirus vaccine, and segments about violent crime in Columbus and local barbers encouraging voter registration. 35:45 Rhea Farberman with Trust for America's Health, discusses their new report on obesity 46:10 Dr. Sanford Seigel, a urologist, discusses prostate cancer. 56:15 Comments from U-S Senator Sherrod Brown (D-Ohio), who served as Ohio's Secretary of State from 1983-91, offering advice on voting in the November election amid complications from the pandemic.

As rare as Huntington's Disease is, even rarer is Juvenile Huntington's Disease (JHD). What is JHD? How is it different from HD? What is it like to have JHD? Learn about JHD and hear from a caretaker of a JHD patient on this month's HOPES Podcast! The music heard in today's episode was found on freemusicarchive. Podcast produced by Sammy Potter and Cat Fergesen. Graphic by Kenneth Ronquillo For more information on the Huntington's Disease Society of America, visit www.hdsa.org. To learn more about HOPES or Huntington's Disease, visit hopes.stanford.edu/. Per Jody's request, to learn about The Shepherd's Gift, an organization raising awareness for HD, visit http://www.theshepherdsgift.org/. Or, learn more about JHD at these links: https://hdsa.org/what-is-hd/history-and-genetics-of-huntingtons-disease/juvenile-onset-hd/ https://en.hdbuzz.net/264 https://www.futuremedicine.com/doi/abs/10.2217/nmt.13.18 https://hdsa.org/find-help/community-social-support/social-workers/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3022767/

Imagine being cast in a major motion picture, and suddenly having to fight your truth, or at least hide it until you are ready. You fight it, don't want to confront it, and basically avoid it because you have to heal yourself before you can be yourself. Sound familiar. Brian Falduto of "Fancy Pants" fame from the movie School of Rock, had to start hiding and confronting his truth at age 11, in front of the world. Then he realized, his truth is his truth. Now this actor, singer, and life coach, guides others to freely step into their truth without shame. We're kicking off this pre-pride show with a fun and candid conversation about letting healing guide you to your truth to have PRIDE in yourself. Also make sure you stay on the lookout fro Brian's new music video - God Loves Me Too - being released during PRIDE season. About BrianAt the age of 11, Brian was cast alongside Jack Black by casting director Ilene Starger and Golden Globe-winning director Richard Linklater in the Scott Rudin / Paramount Pictures film School of Rock as Billy, a.k.a. (“Fancy Pants”). Brian returned to working on and pursuing his craft in college. A dual-degree graduate in Theatre Performance and Arts Administration, Brian proudly calls himself an alumnus of Wagner College. Since college, Brian has immersed himself back into the industry, working with renowned theatre organizations such as the Broadway PR firm DKC/O&M, the Broadway producing company Jujamcyn Theatres, the regional Paper Mill Playhouse, the Off-Broadway show Fuerza Bruta, the Venus / Adonis Theatre Festival, and the New York International Fringe Festival. He has also taken a dive into the world of radio with various formats including 95.5 WPLJ, 77WABC on the AM dial, and Radio 103.9. However, he is especially proud of the role he had in helping bring country music back to NYC with NASH FM 94.7, the flagship station of the now national and influential NASH brand. Bit by the music industry bug, Brian is now a singer-songwriter himself, delivering heartfelt lyrics through infectious melodies. His debut, acoustic EP, “Love One Another” was released on June 13, 2017 and within 24 hours hit #94 on the US iTunes Singer-Songwriter charts. By the end of the week, it was #64 on this same chart in the UK and #31 for overall album sales on iTunes in Norway. Prior to releasing his 2018 Live Performance Session series on YouTube, Brian spent the majority of 2017 sharing his music live in concert throughout the tri-state area and also devoted some time partnering with various non-profits including The Trevor Project, H.D.S.A. (Huntington’s Disease Society of America), S.A.G.E. (Services & Advocacy for GLBT Elders), and H.E.A.R.T. (Help Educate At Risk Teens Foundation), all causes dear to his heart. Brian was recently named one of the “20 most influential, outspoken, and optimistic individuals on the planet” by PrideLife Magazine in their 20th Anniversary #20intheir20s issue. The past few Pride seasons have brought great opportunities for Brian to continue his advocacy for the LGBTQ community with Broadway Sings for Pride at their 8th & 9th annual star-studded benefit concerts for the Tyler Clementi Foundation & through his own efforts organizing NYC's 1st ever LGBT Songwriter's Night in support of The Trevor Project, a now annual event. Most recently, Brian has had some amazing opportunities to share his life story openly and honestly through both a self-written piece in The Advocate and a heartfelt interview with Now This News, both of which have since gone viral. Brian is the founder of his own life coaching business in compliance with the International Coach Federation standards and is part of the marketing committee for the Gay Coaches Alliance. He also hosts "The Gay Life Coach Podcast," which provides biweekly queer mindfulness content & can be found on Instagram as @thegaylifecoach. Brian’s 1st studio album “Stage Two” dropped at the end of 2018 & featured...

May is Huntington's Disease Awareness Month and the Utah chapter president for the Huntington’s Disease Society of America, Morgan Pratt, joins Boyd to discuss the terminal disease and how listeners can help through donations. Morgan Pratt is diagnosed with Huntington's disease, and while fighting for her life she is also fighting for the cause as she spreads awareness and hope.  While many of the organization's events are currently postponed, you can still donate at utah.hdsa.org to support the cause.  ‘Inside Sources with Boyd Matheson,’ Opinion Editor at Deseret News, takes you inside the latest political news and current events, providing higher ground for today's discussions. Listen live Monday through Thursday from 11 am to noon at 1160 AM and 102.7 FM, online at KSLNewsradio.com, or on the app. Listen on-demand as a podcast on your favorite platform or web browser. Follow us on Facebook and Instagram.  Want more Boyd? Don’t forget to listen to his Deseret News podcast ‘Therefore, What?,’ sign up for his weekly newsletter, and follow him on Twitter.

Louise Vetter, President, and CEO of the Huntington's Disease Society of America (HDSA) speaks with James Valvano about the HD Trial Finder. We must broaden awareness of studies and trials for our Huntington's disease population.

Ed is a consultant neurologist at the National Hospital for Neurology and Neurosurgery and Associate Director of the UCL Huntington’s Disease Centre, where his research team is focused on accelerating drug development through discovering new biomarkers for Huntington’s disease. He leads an MRC-supported longitudinal biomarker study, HD-CSF, and is Global Chief Investigator of the HDClarity study of cerebrospinal fluid in Huntington’s disease. He led the development of the first measurement platform to quantify the mutant huntingtin protein in cerebrospinal fluid and the discovery of neurofilament light protein as the first blood biomarker to predict onset of Huntington’s. He is a senior advisor and investigator in the Ionis / Roche programme to lower the production of mutant huntingtin, the cause of Huntington’s disease. He won the Huntington Society of Canada Community Leadership Award in 2012, the Huntington’s Disease Society of America Researcher of the Year Award in 2014 and Huntington Study Group Insight of the Year Awards in 2015 and 2017. Ed co-founded HDBuzz, the leading source of plain-language research news for the global HD Community.

The Huntington’s Disease Society of America (HDSA) is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with Huntington’s disease and their families. In the battle against Huntington’s disease no one fights alone.https://hdsa.org/HD affects the whole brain, but certain areas are more vulnerable than others. Pictured above are the basal ganglia – a group of nerves cell clusters, called nuclei. These nuclei play a key role in movement and behavior control and are the parts of the brain most prominently affected in early HD.What Is Huntington’s Disease?Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.The symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.Symptoms usually appear between the ages of 30 to 50, and worsen over a 10 to 25-year period. Ultimately, the weakened individual succumbs to pneumonia, heart failure or other complications. Everyone has the gene that causes HD, but only those that inherit the expansion of the gene will develop HD and perhaps pass it on to each of their children. Every person who inherits the expanded HD gene will eventually develop the disease. Over time, HD affects the individual’s ability to reason, walk and speak.Symptoms Include:Personality changes, mood swings & depressionForgetfulness & impaired judgmentUnsteady gait & involuntary movements (chorea)Slurred speech, difficulty in swallowing & significant weight lossThe Huntingtin GeneHuntington’s disease is a hereditary neurodegenerative disorder caused by an expansion of a repeating CAG triplet series in the huntingtin gene on chromosome 4, which results in a protein with an abnormally long polyglutamine sequence. HD is one of a larger family of polyglutamine repeat disorders, all of which areneurodegenerative diseases. It is inherited in an autosomal dominant fashion, so that each child of an affected parent has a 50% chance of developing the disease. There is currently no cure or treatment which can halt, slow or reverse the progression of the disease.The HD gene was identified in 1993. It contains a repeating sequence of three base-pairs, called a “triplet repeat” or “trinucleotide repeat.” An excess number of CAG repeats in the gene results in a protein containing an excess number of glutamine units.The normal function of huntingtin is not known, but the expanded polyglutamine sequence in the huntingtin protein is in some way toxic to brain cells. Just as in other polyglutamine expansion disorders, certain neurons appear to be more vulnerable to damage in HD. Atrophy is most marked in the corpus striatum of the basal ganglia, including the caudate and putamen. In later phases of the disease, other regions of the brain are also affected.The Progression of HDHuntington’s Disease manifests as a triad of motor, cognitive, and psychiatric symptoms which begin insidiously and progress over many years, until the death of the individual. The average length of survival after clinical diagnosis is typically 10-20 years, but some people have lived thirty or forty years. Late stage HD may last up to a deca

Patients with rare diseases often have a complex constellation of symptoms that require the care of multiple specialists. Getting access to the needed mix of physicians and counselors can represent geographic and scheduling challenges for patients and caregivers and create difficulties in coordinating care between specialists. One approach to addressing these needs has been the development of centers of excellence that can provide comprehensive and coordinated care for patients with experts in their condition. We spoke to Amber McCarthy, a Huntington’s disease social worker with UTHealth/UT Physicians in Houston, about the Huntington’s Disease Society of America’s Centers of Excellence, how these centers operate, and how they are transforming care for Huntington’s disease patients.

Scott Porter is a multi-faceted talent with experience in theater, film, television, and voice acting. He’s had roles in Friday Night Lights, Speed Racer, and Hart of Dixie as well as lent his voice to some of the biggest franchises in gaming, including Madden NFL, Minecraft, Spider-Man, and Telltale’s The Walking Dead and Guardians of the Galaxy. We sat down at E3 and discussed his acting career, where his love of gaming comes from, and his personal involvement with Huntington’s Disease Society of America.

Gene Veritas – whose real name is Kenneth P. Serbin – has been active in the Huntington’s disease community since his mother’s diagnosis with the disease in 1995. She died of HD in 2006 after a 20-year fight. Serbin tested positive for the HD gene in 1999. His daughter Bianca tested negative in the womb and is today a healthy 18-year-old college student. Since 1998, Serbin has served as a volunteer advocate for the Huntington’s Disease Society of America (HDSA). He adopted the pseudonym “Gene Veritas” in January 2005, when he started the blog “At Risk for Huntington’s Disease” (www.curehd.blogspot.com). He has posted 270 articles on numerous aspects of HD, its social impact, and the quest for treatments. In 2007, he helped initiate the effort in California to obtain funding for HD research from the state’s world-leading stem cell institute. In 2011, Serbin came out about his gene-positive status by keynoting the 6th annual HD Therapeutics Conference, sponsored by CHDI Foundation, Inc. That year he was also named the HDSA Person of the Year. In 2012, he went fully public, publishing the essay “Racing Against the Genetic Clock” in The Chronicle of Higher Education. In 2017, Serbin, his wife Regina, and daughter Bianca participated with HD families from around the world in #HDdennomore, Pope Francis’ special audience with the HD community at the Vatican in Rome. A scholar of Brazilian history, Serbin has also collaborated with advocates for the Associação Brasil Huntington (Brazilian Huntington’s Association). Serbin is a professor in the Department of History at the University of San Diego.

After years of misdiagnoses, Seth Rotberg’s mother was finally diagnosed with Huntington’s Disease (HD) when he was 15 years old. At the age of 20, Seth had genetic testing and also tested positive for HD. Initially, Seth stayed in the “genetic disease closet,” telling only close friends about his positive test results and waiting 3 years to tell his father and sister. The loss of two close friends at a young age shifted Seth’s perspective, inspiring him to open up about his positive genetic testing results, to strive to live fully in the present while hoping and working toward a brighter future and a cure for HD. Story Reference Points: What is Huntington’s Disease (HD)? @ 1:45 Seth’s mother is diagnosed with Huntington’s Disease @ 4:07 Seth has genetic testing done for HD at age 20 @ 14:22 Why Seth wishes he’d had genetic counseling before HD testing @ 18:44 Seth seeks out genetic counseling 6 years after testing @ 23:25 Seth becomes involved with HD support organizations @ 25:04 Seth loses a close friend in an accident @ 27:25 HD and research @ 31:52 The genetic disease closet @ 35:00 HDYO, HDSA, and HD Buzz as resources @ 36:55 Misconceptions surrounding HD @ 39:49 Links and Resources Seth’s website Seth’s TEDx talk HD Resources: Huntington’s Disease Youth Organization Huntington’s Disease Society of America HD Buzz Connect with Seth on Social Media: Seth on Twitter: @Srotberg15 Seth on Instagram: @Rotberg15 Watch for Seth’s upcoming interview on the DNA Today Podcast Check out other Patient Stories podcast episodes. Read other Patient Stories on the Grey Genetics Patient Stories Page Do you want to support Patient Stories? You can now make a donation online! Want to support Patient Stories in a non-monetary way? Leave us a review on iTunes, or share your favorite episodes on Social Media. Patient Stories on Twitter: @GreyGeneticsPod Patient Stories on Instagram: @patientstoriespodcast Are you looking for genetic counseling? Patient Stories is sponsored by Grey Genetics, an independent telehealth genetic counseling and consulting company. Book an appointment with a genetic counselor specialized in your area of concern. Choose from our growing Network of Genetic Counselors. All genetic counseling appointments take place over secure, HIPAA-compliant video-conferencing or by phone. Check out our new family history review services here

Lisa Genova graduated valedictorian, summa cum laude from Bates College with a degree in Biopsychology and has a Ph.D. in Neuroscience from Harvard University. Acclaimed as the Oliver Sacks of fiction and the Michael Crichton of brain science, she is the New York Times bestselling author of Still Alice, Left Neglected, Love Anthony, Inside the O’Briensand Every Note Played. Lisa's writing focuses on people living with neurological diseases and disorders who tend to be ignored, feared, or misunderstood, portrayed within a narrative that is accessible to the general public. Through fiction, she is dedicated to describing with passion and accuracy the journeys of those affected by neurological diseases, thereby educating, demystifying, and inspiring support for care and scientific research. She has written about Alzheimer's disease, traumatic brain injury, autism, Huntington's disease, and ALS. Still Alice was adapted into a film starring Julianne Moore, Alec Baldwin, Kristen Stewart, and Kate Bosworth. Julianne Moore won the Best Actress Oscar for her role in the film adaptation of Still Alice in 2015. Speaking about the neurological diseases and disorders she writes about, Lisa has appeared on Today, the Dr. Oz Show, GPS with Fareed Zakaria, CNN, PBS NewsHour, and NPR and was featured in the Emmy award-winning documentary film, TO NOT FADE AWAY. In 2015, Lisa was named one of the U.S. Top 50 Influencers in Aging by Next Avenue. She received The Pell Center Prize for Story in the Public Square, for "distinguished storytelling that has enriched the public dialogue," The Sargent and Eunice Shriver Profiles in Dignity Award, The Global Genes RARE Champions of Hope Award, and The American College of Neuropsychopharmacology Media Award for "informing the public about Treatment and ongoing research in medical illness." In 2016, she received an Honorary Doctorate of Humane Letters from Bates College, The Alzheimer's Association's Rita Hayworth Award, and The Huntington’s Disease Society of America Community Awareness Award. She is co-Chairman of the Ric and Jean Edelman Alzheimer’s XPRIZE, launching worldwide in 2019. Lisa’s TED talk—What You Can Do To Prevent Alzheimer’s—was one of the most popular TED talks of 2017 and has been viewed over 4 million times. For more of Lisa:https://www.lisagenova.com/ To become a patron and help this program continue producing Mood Altering Substance, go to www.patreon.com/hellohuman and pledge any amount. For more of us: Facebook: https://www.facebook.com/hellohumans.co/ Instagram: https://www.instagram.com/hellohumans.co/ Twitter: https://twitter.com/HelloHumans_co And if you’d like to buy us a coffee (or burrito) once a month to help us keep going, you can become a patron by going to https://www.patreon.com/hellohuman and making a pledge of any amount.

On Sunday's program I take a quick look at the chickenpox outbreak in Northern Kentucky, the lawsuit, Gov. Matt Bevin and "chickenpox parties". A guest on the show a number of times, Dr Peter Hotez appeared on one of the largest podcasts out there--The Joe Rogan Experience, where they discussed infectious diseases, vaccines and autism for nearly 2 hours. In the second half, I play an interview with Senior Director for Mission and Scientific Affairs with the Huntington's Disease Society of America, George Yohrling, PhD about Huntington's disease.

Huntington's disease (HD) is a progressive brain disorder that deteriorates a person's physical and mental abilities. It primarily affects adults; however, there is a form that affects children, albeit less common. Many describe the symptoms of HD as having ALS, Parkinson's and Alzheimer's – simultaneously! Joining me today to look at Huntington's disease is the Senior Director for Mission and Scientific Affairs with the Huntington's Disease Society of America (HDSA), George Yohrling, PhD.

Ed a consultant neurologist at the National Hospital for Neurology and Neurosurgery and Associate Director of the UCL Huntington’s Disease Centre, where his research team is focused on accelerating drug development through discovering new biomarkers for Huntington’s disease. He leads an MRC-supported longitudinal biomarker study, HD-CSF, and is Global Chief Investigator of the HDClarity study of cerebrospinal fluid in Huntington’s disease. He led the development of the first measurement platform to quantify the mutant huntingtin protein in cerebrospinal fluid and the discovery of neurofilament light protein as the first blood biomarker to predict onset of Huntington’s. He is a senior advisor and investigator in the Ionis / Roche programme to lower the production of mutant huntingtin, the cause of Huntington’s disease. He won the Huntington Society of Canada Community Leadership Award in 2012, the Huntington’s Disease Society of America Researcher of the Year Award in 2014 and Huntington Study Group Insight of the Year Awards in 2015 and 2017. Ed co-founded HDBuzz, the leading source of plain-language research news for the global HD Community.

Since the end of the Second World War, the international rules-based system has been determined by developed countries with economic power who came together to form multilateral organizations like the United Nations. In today’s world, other nations with conflicting interests are challenging the foundations of the UN and this international rules-based system, making it difficult to reach consensus on pressing global issues like climate change, migration, terror, protectionism, and pandemics. How do we begin to repair this broken international rules-based system? Andrew Mitchell, British Member of Parliament and Former Secretary of State for International Development, discusses ways in which the UN can be adapted to today’s globalized society. Today on CID’s Speaker Series podcast, Anna Mysliwiec, Masters in Public Policy student at the Harvard Kennedy School, interviews Andrew Mitchell who provides further insight on the deterioration of the international rules-based system and how the world can begin to repair it. // www.growthlab.cid.harvard.edu // Interview recorded on October 5, 2018. About Andrew Mitchell: Andrew was born in 1956 and is married with two daughters. He was educated at Rugby School and Cambridge University, where he studied history and was elected as President of the Cambridge Union in 1978. Andrew served in the Army (Royal Tank Regiment) before joining Lazard where he worked with British companies seeking large-scale overseas contracts. He was the Member of Parliament for Gedling from 1987 to 1997. During this period, he held office as a Government Whip and as Minister for Social Security. He also served as a Vice-Chairman of the Conservative Party from 1992 to 1993. In 2001 he was re-elected to Parliament as MP for Sutton Coldfield. In November 2003, he was appointed Shadow Minister for Economic Affairs. From September 2004 until the end of the Parliamentary term, he was Shadow Minister for Home Affairs. Following the General Election in May 2005 Andrew joined the Shadow Cabinet and was appointed Shadow Secretary of State for International Development. Andrew Mitchell was Secretary of State for International Development from May 2010 until September 2012 and Government Chief Whip from September – October 2012. An experienced and highly effective MP, Andrew is committed to serving the people of Sutton Coldfield. Andrew is currently campaigning on a number of important local issues in Sutton Coldfield including issues affecting our local environment and the general well-being of the Sutton Coldfield community. He is very active in addressing issues of local development where he feels they adversely affect the Town. He actively supports a number of local charities including Breastfriends, Norman Laud Association, Sutton Coldfield Branch of the RNLI, Parkinson’s Disease Society, Sutton Coldfield Sea Cadets, Greenacres, and Sutton Coldfield Guiding. Since becoming Sutton Coldfield’s MP he is particularly pleased to have achieved the reinstatement of the Sutton Coldfield Civic Service and established the Sutton Coldfield Inter-Schools Debating Competition. As Sutton Coldfield’s MP, Andrew deals with hundreds of letters and emails from constituents every week. He has a dedicated staff of 5 people to assist him with this work. The issues raised are wide ranging and can fall within the responsibility of Government Departments or Birmingham City Council as well as a number of the agencies that now administer specific matters such as immigration, benefits and the environment. In addition he holds regular Advice Sessions where constituents can see him to discuss political issues or matters of personal concern. Andrew has a home in Sutton Coldfield and spends as much time as possible regularly visiting local schools, businesses and voluntary organisations.

Danish Bhatti: Hello and welcome to movement disorder podcast.I am Danish Bhatti. I am a Movement Disorders Neurologist at University of Nebraska Medical Center (UNMC). This week’s podcast will focus on Huntington’s disease and its implications. To discuss this fascinating disease we have the pleasure of having on our show, Dr. Amy Hellman, the director for Huntington’s Disease Society of America (HDSA) Centre of Excellence for Huntington’s disease. I have worked with Amy for almost 4 years now and the most important thing I can tell you about her is that she’s always smiling and is always happy. Amy what’s your secret for that. Amy Hellman: No I don’t know that I have a secret for it. I am just very blessed that I am naturally a happy person. Danish Bhatti: So why don’t you start telling us a little bit about yourself and tell us one thing that you think no one will know about your career and movement disorders. Amy Hellman: Well I am originally from California but I grew up mostly in Nebraska (in) a small town out western Nebraska. I went to medical school here at UNMC. I did my neurology training at UC Davis in […] The post MD Podcast: HD shaky doctors with Amy appeared first on Danish Bhatti.

Earning a scholarship for pole vaulting in college, competing as a professional athlete, starring on a reality TV show, traveling the world to teach fitness workshops, raising money to fight a chronic disease and growing babies inside of her are just a few of the things that earn fitness expert (and mother) Shana Verstegen the right to be called a 'Jill of all trades.' On this Mother's Day 2018 episode of All About Fitness Shana talks about how she got back in shape after giving birth to her son, how she is staying in shape during pregnancy and shares a few ideas for how to make family time fitness time. In addition, Shana talks about how Huntington's Disease has affected her life and what she is doing to raise awareness about the effects of this debilitating disease.  To visit the online, electronic version of Shana Verstegen: CLICK HERE To learn more about Huntington's Disease and the important work being done by the Huntington's Disease Society of America, FOLLOW THIS LINK Please visit the sponsor of All About Fitness: Terra Core - Better results from better products!Use code AAF to save 20% on the purchase of a Terra Core FOLLOW THIS LINK to see the Terra Core in action   www.petemccallfitness.com pete@petemccallfitness.com Instagram: @PeteMcCall_fitness Twitter: @PeteMc_fitness 

Therese Crutcher-Marin, who has a Masters in Health Care Administration, is retired from Sutter Auburn Faith Hospice, having worked in health care for twenty years. She is publishing her first non-fiction book, a heartfelt memoir, whose proceeds will be donated to the Huntington’s Disease Society of America. She lives in Auburn with her husband, John Marin, the surviving sibling of a family devastated by Huntington’s disease.

Our incredible special gues this afternoon is Kenneth P. Serbin, Ph.D., professor and chair in the USD College of Arts and Sciences,Department of History, served as vice president, president, and immediate past president of the Brazilian Studies Association (2004-2010).  He also was the co-chair of the Brazil Section of the Latin American Studies Association from 2003-2006. Kenneth Serbin’s mother died of Huntington’s disease in 2006 after a 20-year battle against the disease. Serbin tested positive for HD in 1999. His daughter Bianca tested negative for HD in the womb and is today a healthy 13-year-old eighth grader. Since 1998, Serbin has served as a volunteer advocate for the Huntington’s Disease Society of America (HDSA). Adopting the pseudonym “Gene Veritas,” in January 2005 he started the blog “At Risk for Huntington’s Disease” (www.curehd.blogspot.com), where he has posted more than 160 articles. Starting in 2007, he initiated the effort in California to obtain funding for HD research from the state’s world-leading stem cell institute. In 2011, Serbin went public about his gene-positive status by keynoting the 6th annual HD Therapeutics Conference of the CHDI Foundation, Inc. That year he was also named the HDSA Person of the Year. Serbin lives with his wife Regina and Bianca in San Diego. He teaches history at the University of San Diego.

Tuesday, July 16, 2013 - 3:30 pm PST/6:30 pm EST Our incredible special guest tonight is Dr. Christopher Ross who is Professor of Psychiatry, Neurology, Pharmacology and Neuroscience at Johns Hopkins University School of Medicine, Director of the Division of Neurobiology, Director of the NINDS-funded Baltimore Huntington’s Disease Center, and Director of the Huntington’s Disease Society of America Center of Excellence at Johns Hopkins. Tonight PI Dr. Ross will give us an update on the HSG clinical trial PREQUEL. The results are in on this CoQ10 trial.

Dennis brought back the mini podcast to discuss his charitable effort Dennis Has a Mustache as he raises money for the Huntington’s Disease Society of America and the Pancreatic Cancer Action Network.

PRE-RECORDED on August 13, 2012 - Our incredible special guest tonight is Gabrielle Hamilton, therapist, speaker, published author and Huntington's Disease (HD) Activist. In 1994 Gabrielle joined the board of the Greater NY/LI Chapter of Huntington's Disease Society of America. By 1995 she became the President and during her leadership the Chapter became the first to provide monies directly to the local HD Clinics to run social work support services—later called the Centers for Excellence.  Recently, she started writing her “Dear Gaby” column at TheHuntingtonsPost.org. Read her most recent column about testing at thehuntingtonspost.org/GabyArchive.html email your questions to her at deargaby@thehuntingtonspost.org 

SPECIAL GUEST: Lauren Holder.... SUBJECT 1: H.R. 678 (The HD Parity Act).... LAUREN is our incredible special guest on HELP 4 HD. She is an HD activist with the "PASSION FACTOR" and she is on a mission to educate our government about how critically important H.R. 678 is to all of our HD families.... * H.R. 678 is a Bill before Congress to require the Commissioner of Social Security to revise the medical criteria for evaluating disability in a person diagnosed with Huntington's Disease and to waive the 24-month waiting period for Medicare eligibility for individuals disabled by Huntington's Disease.... With so many challenges facing us in finding Social Services, we need more extraordinary people like Lauren to join our cause. Go Lauren!.... SUBJECT 2: HDSA/NYA.... LAUREN is also a volunteer for the Huntington's Disease Society of America and the National Youth Alliance. She has organized several events to raise awareness and money to benefit our youth who are affected by HD. Lauren, you are a dynamo! We can all use your expert advice... EVERYONE is invited to listen or call into the show.... Click "FOLLOW" for email reminders of our upcoming shows.... HELP 4 HD shows are available “On Demand Episodes” for download.... Talk to you on Monday!!