Shows
WeHaveAVoiceHD Research: What's in store for 2025 and beyond according to AIKevin uses AI to analyze all information to get a picture of what may happen in regards to HD research in light of possible policy changes due to a new U.S. administration. This is not a political post.
2025-02-0231 min
WeHaveAVoiceRare Disease DayHost, Kevin Jess, talks about Rare Disease Day which is just around the corner
2024-02-1312 min
WeHaveAVoiceNew Guidelines to Revolutionize Care for Huntington's Disease PatientsKevin Jess talks about recent papers published and about to be published concerning changing the diagnostic criteria for HD
2023-12-2113 min
WeHaveAVoiceBunny Clark and the 10th Annual Huntington's Heroes WalkBunny Clark talks about The Walk for Huntington's Disease May 28th
2023-05-2313 min
2023-04-2122 min
WeHaveAVoiceWeHaveAFace! What's next?Kevin Jess announces charity closings and discusses what's next for WeHaveAFace.
2023-03-1620 min
WeHaveAVoiceWorthlessnessKevin Jess talks about the feeling of worthlessness and how the media may drive this feeling.
2022-09-2921 min
WeHaveAVoiceCoffee Talk with Kevin and Jen (Chat #7)Jen and Kevin discuss possible implications of the overturning of Roe v Wade for the Huntington's Community
2022-07-0138 min
WeHaveAVoiceCoffee Talk with Kevin and Jen (Chat #6)Jen and Kevin talk about hope, testing and other topics
2022-06-271h 00
WeHaveAVoiceCoffee Talk with Jen and Kevin (Chat #5)Kevin and Jen talk about a number of things but are focusing on the upcoming International Education Day, June 25
2022-06-1644 min
WeHaveAVoiceKevin speaks about memories and nurturing relationshipsKevin talks about memories of his wife Sheila and how it's important to nurture friendships
2022-06-1428 min
WeHaveAVoiceCoffee Talk with Jen and Kevin (Chat 4)Jen gets an unexpected call and discussion ensues.
2022-06-1144 min
WeHaveAVoiceCoffee Talk with Jen and Kevin (Chat #3)Jen and Kevin chat about disappointments over the years in the Huntington's Disease community
2022-06-0247 min
WeHaveAVoiceCoffee Talk with Jen and Kevin (Chat #2)Jen and Kevin chat about the death of a loved one and strategies leading up to and after death.
2022-05-2545 min
WeHaveAVoiceCoffee Talk with Jen and Kevin (Chat 1)Kevin and Jen kick off a series of coffee talks concerning Huntington's Disease
2022-05-1739 min
WeHaveAVoiceJames Valvano and what's next for WeHaveAFaceJames speaks about the Project Change and an array of topics
2022-03-2234 min
WeHaveAVoiceDr. Herwig Lange and James Valvano discuss why it is necessary to change the diagnostic criteria for Huntington's DiseaseDr. Herwig Lange and James Valvano discuss why it is necessary to change the diagnostic criteria for Huntington's Disease. To watch this episode with video, please go to https://www.youtube.com/watch?v=ZJs8EHEPMag
2021-11-2557 min
WeHaveAVoiceLouise Vetter concerning support for changes to the current diagnostic criteria for Huntington's DiseaseLouise Vetter (President and CEO of HDSA) underscores her support for the initiative to change the current diagnostic criteria and introduces the new Huntington's disease support platform - #PatientsLikeMe
2021-11-2329 minWeHaveAVoiceErin Paterson speaks about having Huntington's Disease and starting a familyErin speaks with Kevin about her 5 1/2 year struggle with fertility amidst having a diagnosis of HD
2021-11-0844 min
WeHaveAVoiceKevin Jess speaks candidly about the recent death of his wife SheilaKevin Jess speaks about his wife Sheila, how they met up until her recent passing.
2021-10-1423 min
WeHaveAVoiceWeHaveAVoice: HDSA - HD Parity Act with Jennifer Simpson!Please listen to James Valvano interview Jennifer Simpson HDSA on the HDParityAct! It's time to pass the HD Parity Act and remove the two-year waiting period for Medicare and SSDI! We must communicate the dire need of these medical supports and services to the US Congress!
2021-05-1131 min
WeHaveAVoiceWeHaveAVoice Radio - HD Warrior, John Howard Poetry!#WeHaveAVoice Radio - May is #HuntingtonsDisease and #JuvenileHuntingtonsDisease Awareness Month! Our incredible special guest is John Howard! John recites his powerful poetry! #iHeartRadio #LetsTalkAboutHD #YouAreLoved
2021-05-0708 min
WeHaveAVoiceWeHaveAFace PSA - HDSA: HD Parity Act with Jennifer Simpson!On May 11, 2021, James Valvano will interview Jennifer Simpson (HDSA Assistant Director, Youth & Community Services), to discuss the HD Parity Act! ALS just recently made drastic changes to the description of what ALS is. They furthered their efforts by having unanimous consent by Congress to pass their bill for patients to obtain immediate access to benefits. The HDSA wishes to have the HD Parity Act pass by unanimous consent by Congress for individuals with Huntington's disease to receive the same benefits as our friends with ALS. Act today! - Join the HD Acvocacy Act: https://cqrcengage.com/hdsa/Caucus
2021-05-0303 min
WeHaveAVoiceJimmy Pollard - Finding Nana's SmileJimmy Pollard talks about his new children's book, Finding Nana's Smile
2020-11-3033 minWeHaveAVoiceJames Valvano: Season 1 of WeHaveAFace TVKevin Jess interviews James Valvano about the first season of WeHaveAFace TV
2020-10-181h 04
WeHaveAVoiceDr. Finn of the Mayo Clinic: How and when to talk to children about Huntington's disease.Dr. Kelsey M. Finn is a geneticist, bioethicist, and empathy enthusiast. Dr. Finn has devoted a large part of her career to researching whether, when, and how to communicate about genetic conditions and health information with children. She has interviewed countless parents, kids, and health providers to learn from their experiences and perspectives on how best to communicate with kids. A current anonymous survey is available for parents and guardians to help Dr. Finn with her research. www.WeHaveAFace.org/survey2
2020-08-0828 min
WeHaveAVoiceDr. Bird of the University of Washington speaks about the HDSA Centers of ExcellenceDr. Bird of the University of Washington speaks about the HDSA Centers of Excellence. Dr. Herwig Lange of the George Huntington Institute of Germany joins the conversation. Topics: What is a Center of Excellence (CoE)? How does a facility become a Center of Excellence? Should doctors diagnose patients earlier so a treatment plan can be put in place? How can environmental factors affect Huntington's disease patients regarding the onset of symptoms? Update from Louise Vetter (CEO/President) of the HDSA regarding Centers of Excellence using telemedicine during these trying times with COVID-19.
2020-08-0454 min
WeHaveAVoiceGrandma has HD and it's okay with Dr. Kelsey FinnDr. Kelsey Finn speaks about when to talk to your children about Huntington's Disease and her new children's book.
2020-07-2139 min
WeHaveAVoiceHD/JHD Facebook Wish List. What's that about?Marie Blankenshop, Jen Almeida and Crystal Zachary speak out their new Facebook Wish List group
2020-06-1443 min
WeHaveAVoiceCoping with separation anxiety during Covid-19 pandemicDr. Susan Potter and Dr. Herwig Lange tackle a serious issue concering separation anxiety during the pandemic.
2020-04-3058 min
WeHaveAVoice#WeHaveAFace #WeHaveAVoice - Carol Kennedy (President of WHAF England and Wales) HD3 Training Program and COVID-19 Discussion#WeHaveAFace #WeHaveAVoice - Carol Kennedy (President of WHAF England and Wales) HD3 Training Program and COVID-19 Discussion.
2020-04-2952 min
WeHaveAVoiceA trip down memory lane with Mary Etta RobertsonMary talks with Leanne and Kevin about yesterday and today
2020-04-231h 00
WeHaveAVoiceGerman Dr. Ansgar Klimke: New approach for hydroxychloroquine in aerosol form for COVID-19#WeHaveAVoice Radio! German Doctor: Dr. Ansgar Klimke - New approach for hydroxychloroquine in aerosol form for #COVID19 #Coronavirus #Spreaker #CDC #WHO
2020-04-1442 min
WeHaveAVoiceWeHaveAVoice: Discussing the Coronavirus (COVID-19)#WeHaveAFace #WeHaveAVoice: Discussing the Coronavirus (COVID-19) - #Coronavirus #COVID19 #CDC #HuntingtonsDisease
2020-03-2055 min
WeHaveAVoiceCherry Chism: When you leave the Roche clinical trialCherry Chism talks about her husband leaving the Roche Trial
2020-03-1944 min
WeHaveAVoiceLouise Vetter, President and CEO of HDSA: HD Trial FinderLouise 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.
2020-03-1640 min
2020-03-1235 min
WeHaveAVoiceJonathan Monkemeyer Rare Disease DayJonathan speaks to us about Rare Disease Day event as well as reusing existing drugs to treat or cure HD/JHD
2020-03-1253 min
WeHaveAVoiceJames Valvano: New Horizons After 2020WeHaveAFace founder, James Valvano talks about his upcoming retirement and the future of WeHaveAFace.
2020-03-081h 08
WeHaveAVoiceJimmy Pollard of CHDI: HD Education on a Global ScaleJimmy Pollard talks about his experiences and imparts lessons to apply to HD caregiving.
2020-03-0758 min
WeHaveAVoiceGene Veritas: CHDI Therapeutics ConferenceGene Veritas talks about his recent attendance at the CHDI Therapeutics Conference.
2020-03-0553 min
WeHaveAVoiceKaren Marais: HD in South AfricaKaren Marais talks about her relationship with her partner Chris who has Huntington's Disease
2020-03-0358 min
WeHaveAVoiceAdvocating in suicide prevention and other topics with Sarah Warehime and Dr. Herwig LangeLeanne and Kevin speak with Sarah Warehime, a beginner as a suicide prevention advocate and Dr. Herwig Lange. We talk about a range of topics including suicide prevention and how to get involved.
2020-01-1157 minWeHaveAVoiceA caregivers experience with behaviorial issues with Huntington's Disease"Kay" talks about her relationship with her best friend who has Huntington's Disease and how her mood swings are affecting important decisions she has to make.
2019-12-2957 minWeHaveAVoiceDiamonds on the WaterKevin Jess reads an excerpt from his novel that is still in progress.
2019-11-1409 min
WeHaveAVoiceOne woman's experience with testing for Huntington's DiseaseKevin Jess talks with his daughter about her recent experience with testing for Huntington's Disease
2019-10-131h 10
WeHaveAVoice2019 Convention and Event updateOur panel of speakers for our Convention in November, 2019
2019-09-2703 min
WeHaveAVoiceJames Valvano talks with Kevin about his climb in ScotlandJames Valvano speaks with Kevin about his mountain climb at Ben Nevis, Scotland and a talk about future shows.
2019-08-291h 10
WeHaveAVoiceJuvenile Huntington's Disease: A Story of FriendshipKevin speaks with Rebecca Bratt, Erin Wade's best friend
2019-08-0847 min2019-08-0235 min
2019-06-2321 min
WeHaveAVoiceWeHaveAFace with special guest James ValvanoKevin and James talk about events and issues of the day relating to HD advocacy and upcoming events
2019-04-2948 min
WeHaveAVoiceThe case for repurposing existing drugs for the fight against Huntington's DiseaseJonathan Monkemeyer talks with Kevin Jess and Leanne Delong
2019-04-271h 05
WeHaveAVoiceHuntington's Disease Awareness Month (The Port Pub and Bistro)Spotlight on Huntington's Disease Awareness month initiatives for the month of May
2019-04-2205 min2019-03-2407 min
WeHaveAVoiceWeHaveAFace News and Events (TEVA Update!)WeHaveaFace news and updates concerning fundraising events from around the world as well as TEVA Pharmaceutical grant updates.
2019-03-0907 min
WeHaveAVoiceDifficulties with HD testingLeanne Delong interviews Kevin Jess in regards to his son being tested for HD
2019-03-0850 minWeHaveAVoiceJames Valvano: Climbing Mountains for Huntington's DiseaseJames Valvano speaks candidly with Kevin about his journey to climb mountains for Huntington's Disease
2019-03-0247 min
WeHaveAVoiceHow And When To Talk To Your Children About Huntington’s DiseaseKevin and Leanne talk with Dr. Bonnie Hennig-Trestman, Leaha Mattinson and Dr. Herwig Lange about the importance of knowing when and how to talk to your children about Huntington’s Disease offering important strategies for best outcomes.
2019-03-0248 min
2019-02-2232 min
2019-02-1748 minWeHaveAVoiceJames Valvano Addresses HD/JHD Community about 2019Founder of WeHaveAFace.org, James Valvano Addresses HD/JHD Community about 2019.
2019-02-1512 minWeHaveAVoiceA New Host for 2019: Kevin Jess (VP of WHAF Canada)A couple of announcements to our community.
2019-01-2103 min
2018-09-2304 min
2018-08-2259 min
WeHaveAVoice#WeHaveAVoice with Leaha Mattinson!Leaha Mattinson is a change management specialist, life coach, speaker, and author who “walks her talk” in a truly extraordinary way. In 2008 she learned she would someday inherit Huntington’s disease, a genetic, neurological, terminal illness that affects the brain and progressively shuts down the mind and body. It was a devastating diagnosis—yet Leaha realized that to be true to the message she shares with clients, she must live her life consciously with enthusiasm, grace, and gratitude. She developed her own wellness protocol to halt the onset of the disease by focusing on nutrition, exercise, restorative sleep, mindfuln...
2018-04-2641 minWeHaveAVoice#WeHaveAVoice Radio: Poetry Project!Listen to #HuntingtonsDisease patient, John Howard as he reads his poetry. @iHeartRadio @Spreaker
2018-04-0808 min
2018-03-2003 min
2018-02-2202 min
2018-02-161h 03
WeHaveAVoice#WeHaveAFace Canada! Introducing Dr. Susan Potter!#HuntingtonsDisease @iHeartRadio @Spreaker
2017-12-1531 min
2017-12-1304 min
WeHaveAVoiceIntroducing WeHaveAFace Mexico!Brenda Vega and Daniel Medina join me to discuss #WeHaveAFace #Mexico
2017-11-2859 min
WeHaveAVoice#WeHaveAVoice - Cindy Moore: Listen to Erin Wade's Story#JuvenileHuntingtonsDisease #FeedingTube
2017-11-0434 min
2017-11-0222 min
2017-10-2306 min
2017-09-1002 min
2017-09-0151 min2017-07-1602 min
2017-07-0530 min2017-07-0302 min
2017-06-2921 min
2017-06-2712 min
2017-06-2102 min
2017-06-0503 min2017-05-2507 min
2017-05-1102 min2017-05-0802 min
2017-05-051h 01
WeHaveAVoiceMay is HD/JHD Awareness Month! #WeHaveAFace LIVE Update!May is HD/JHD Awareness Month! Listen to this LIVE update and stay connected!
2017-05-0104 min