WeHaveAFace.org Inc. has created "WeHaveAVoice" Radio for the Huntington's and Juvenile Huntington's disease community. It is time for the community to speak out...speak up! We must openly share what all of us in the Huntington's community experience on a daily basis! Removing the stigmas and broadening social awareness and acceptance is paramount! Visit: www.WeHaveAFace.org/Radio for more information.
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Host, Kevin Jess, talks about Rare Disease Day which is just around the cornerΑπό τον WeHaveAVoice
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Kevin Jess talks about recent papers published and about to be published concerning changing the diagnostic criteria for HDΑπό τον WeHaveAVoice
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Bunny Clark talks about The Walk for Huntington's Disease May 28thΑπό τον WeHaveAVoice
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Kevin Jess announces charity closings and discusses what's next for WeHaveAFace.Από τον WeHaveAVoice
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Kevin Jess talks about the feeling of worthlessness and how the media may drive this feeling.Από τον WeHaveAVoice
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Jen and Kevin discuss possible implications of the overturning of Roe v Wade for the Huntington's CommunityΑπό τον WeHaveAVoice
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Coffee Talk with Kevin and Jen (Chat #6)
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1:00:22
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1:00:22
Jen and Kevin talk about hope, testing and other topicsΑπό τον WeHaveAVoice
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Kevin and Jen talk about a number of things but are focusing on the upcoming International Education Day, June 25Από τον WeHaveAVoice
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Kevin talks about memories of his wife Sheila and how it's important to nurture friendshipsΑπό τον WeHaveAVoice
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Jen gets an unexpected call and discussion ensues.Από τον WeHaveAVoice
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Jen and Kevin chat about disappointments over the years in the Huntington's Disease communityΑπό τον WeHaveAVoice
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Jen and Kevin chat about the death of a loved one and strategies leading up to and after death.Από τον WeHaveAVoice
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Kevin and Jen kick off a series of coffee talks concerning Huntington's DiseaseΑπό τον WeHaveAVoice
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James speaks about the Project Change and an array of topicsΑπό τον WeHaveAVoice
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Dr. Herwig Lange and James Valvano discuss why it is necessary to change the diagnostic criteria for Huntington's Disease
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Dr. 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=ZJs8EHEPMagΑπό τον WeHaveAVoice
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Louise Vetter concerning support for changes to the current diagnostic criteria for Huntington's Disease
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Louise 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 - #PatientsLikeMeΑπό τον WeHaveAVoice
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Erin speaks with Kevin about her 5 1/2 year struggle with fertility amidst having a diagnosis of HDΑπό τον WeHaveAVoice
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Kevin Jess speaks about his wife Sheila, how they met up until her recent passing.Από τον WeHaveAVoice
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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!Από τον WeHaveAVoice
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#WeHaveAVoice Radio - May is #HuntingtonsDisease and #JuvenileHuntingtonsDisease Awareness Month! Our incredible special guest is John Howard! John recites his powerful poetry! #iHeartRadio #LetsTalkAboutHD #YouAreLovedΑπό τον WeHaveAVoice
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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 …
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Jimmy Pollard talks about his new children's book, Finding Nana's SmileΑπό τον WeHaveAVoice
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James Valvano: Season 1 of WeHaveAFace TV
1:04:31
1:04:31
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1:04:31
Kevin Jess interviews James Valvano about the first season of WeHaveAFace TVΑπό τον WeHaveAVoice
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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 perspective…
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Dr. 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…
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Dr. Kelsey Finn speaks about when to talk to your children about Huntington's Disease and her new children's book.Από τον WeHaveAVoice
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Marie Blankenshop, Jen Almeida and Crystal Zachary speak out their new Facebook Wish List groupΑπό τον WeHaveAVoice
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Dr. Susan Potter and Dr. Herwig Lange tackle a serious issue concering separation anxiety during the pandemic.Από τον WeHaveAVoice
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#WeHaveAFace #WeHaveAVoice - Carol Kennedy (President of WHAF England and Wales) HD3 Training Program and COVID-19 Discussion
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#WeHaveAFace #WeHaveAVoice - Carol Kennedy (President of WHAF England and Wales) HD3 Training Program and COVID-19 Discussion.Από τον WeHaveAVoice
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A trip down memory lane with Mary Etta Robertson
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1:00:46
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Mary talks with Leanne and Kevin about yesterday and todayΑπό τον WeHaveAVoice
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#WeHaveAVoice Radio! German Doctor: Dr. Ansgar Klimke - New approach for hydroxychloroquine in aerosol form for #COVID19 #Coronavirus #Spreaker #CDC #WHOΑπό τον WeHaveAVoice
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#WeHaveAFace #WeHaveAVoice: Discussing the Coronavirus (COVID-19) - #Coronavirus #COVID19 #CDC #HuntingtonsDiseaseΑπό τον WeHaveAVoice
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Cherry Chism talks about her husband leaving the Roche TrialΑπό τον WeHaveAVoice
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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.Από τον WeHaveAVoice
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Dr. Peg talks about the ChAND-HD trial.Από τον WeHaveAVoice
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Jonathan speaks to us about Rare Disease Day event as well as reusing existing drugs to treat or cure HD/JHDΑπό τον WeHaveAVoice
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James Valvano: New Horizons After 2020
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1:08:58
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WeHaveAFace founder, James Valvano talks about his upcoming retirement and the future of WeHaveAFace.Από τον WeHaveAVoice
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Jimmy Pollard talks about his experiences and imparts lessons to apply to HD caregiving.Από τον WeHaveAVoice
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Gene Veritas talks about his recent attendance at the CHDI Therapeutics Conference.Από τον WeHaveAVoice
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Karen Marais talks about her relationship with her partner Chris who has Huntington's DiseaseΑπό τον WeHaveAVoice
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Leanne 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.Από τον WeHaveAVoice
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"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.Από τον WeHaveAVoice
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Kevin Jess reads an excerpt from his novel that is still in progress.Από τον WeHaveAVoice
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One woman's experience with testing for Huntington's Disease
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1:10:23
Kevin Jess talks with his daughter about her recent experience with testing for Huntington's DiseaseΑπό τον WeHaveAVoice
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Our panel of speakers for our Convention in November, 2019Από τον WeHaveAVoice
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James Valvano talks with Kevin about his climb in Scotland
1:10:03
1:10:03
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1:10:03
James Valvano speaks with Kevin about his mountain climb at Ben Nevis, Scotland and a talk about future shows.Από τον WeHaveAVoice
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Kevin speaks with Rebecca Bratt, Erin Wade's best friendΑπό τον WeHaveAVoice
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Kevin and Leanne speak with Cindy Moore, President of WeHaveAFace CanadaΑπό τον WeHaveAVoice
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Kevin Jess talks about milestonesΑπό τον WeHaveAVoice
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