Podcast terbaik WeHaveAVoice (2024)

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=ZJs8EHEPMagOleh WeHaveAVoice

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Louise Vetter concerning support for changes to the current diagnostic criteria for Huntington's Disease 29:56

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3y ago29:56

29:56

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 - #PatientsLikeMeOleh WeHaveAVoice

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Erin Paterson speaks about having Huntington's Disease and starting a family 44:39

3y ago44:39

44:39

Erin speaks with Kevin about her 5 1/2 year struggle with fertility amidst having a diagnosis of HDOleh WeHaveAVoice

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Kevin Jess speaks candidly about the recent death of his wife Sheila 23:52

3y ago23:52

23:52

Kevin Jess speaks about his wife Sheila, how they met up until her recent passing.Oleh WeHaveAVoice

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WeHaveAVoice: HDSA - HD Parity Act with Jennifer Simpson! 31:16

3+ y ago31:16

31:16

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!Oleh WeHaveAVoice

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WeHaveAVoice Radio - HD Warrior, John Howard Poetry! 8:01

3+ y ago8:01

8:01

#WeHaveAVoice Radio - May is #HuntingtonsDisease and #JuvenileHuntingtonsDisease Awareness Month! Our incredible special guest is John Howard! John recites his powerful poetry! #iHeartRadio #LetsTalkAboutHD #YouAreLovedOleh WeHaveAVoice

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WeHaveAFace PSA - HDSA: HD Parity Act with Jennifer Simpson! 3:38

3+ y ago3:38

3:38

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 - Finding Nana's Smile 33:38

4y ago33:38

33:38

Jimmy Pollard talks about his new children's book, Finding Nana's SmileOleh WeHaveAVoice

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James Valvano: Season 1 of WeHaveAFace TV 1:04:31

4y ago1:04:31

1:04:31

Kevin Jess interviews James Valvano about the first season of WeHaveAFace TVOleh WeHaveAVoice

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Dr. Finn of the Mayo Clinic: How and when to talk to children about Huntington's disease. 28:00

4y ago28:00

28:00

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 54:43

4+ y ago54:43

54:43

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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Grandma has HD and it's okay with Dr. Kelsey Finn 39:22

4+ y ago39:22

39:22

Dr. Kelsey Finn speaks about when to talk to your children about Huntington's Disease and her new children's book.Oleh WeHaveAVoice

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HD/JHD Facebook Wish List. What's that about? 43:21

4+ y ago43:21

43:21

Marie Blankenshop, Jen Almeida and Crystal Zachary speak out their new Facebook Wish List groupOleh WeHaveAVoice

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Coping with separation anxiety during Covid-19 pandemic 58:19

4+ y ago58:19

58:19

Dr. Susan Potter and Dr. Herwig Lange tackle a serious issue concering separation anxiety during the pandemic.Oleh WeHaveAVoice

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#WeHaveAFace #WeHaveAVoice - Carol Kennedy (President of WHAF England and Wales) HD3 Training Program and COVID-19 Discussion 52:04

4+ y ago52:04

52:04

#WeHaveAFace #WeHaveAVoice - Carol Kennedy (President of WHAF England and Wales) HD3 Training Program and COVID-19 Discussion.Oleh WeHaveAVoice

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A trip down memory lane with Mary Etta Robertson 1:00:46

4+ y ago1:00:46

1:00:46

Mary talks with Leanne and Kevin about yesterday and todayOleh WeHaveAVoice

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German Dr. Ansgar Klimke: New approach for hydroxychloroquine in aerosol form for COVID-19 42:08

4+ y ago42:08

42:08

#WeHaveAVoice Radio! German Doctor: Dr. Ansgar Klimke - New approach for hydroxychloroquine in aerosol form for #COVID19 #Coronavirus #Spreaker #CDC #WHOOleh WeHaveAVoice

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WeHaveAVoice: Discussing the Coronavirus (COVID-19) 55:18

4+ y ago55:18

55:18

#WeHaveAFace #WeHaveAVoice: Discussing the Coronavirus (COVID-19) - #Coronavirus #COVID19 #CDC #HuntingtonsDiseaseOleh WeHaveAVoice

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Cherry Chism: When you leave the Roche clinical trial 44:08

4+ y ago44:08

44:08

Cherry Chism talks about her husband leaving the Roche TrialOleh WeHaveAVoice

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Louise Vetter, President and CEO of HDSA: HD Trial Finder 40:14

4+ y ago40:14

40:14

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.Oleh WeHaveAVoice

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Dr. Peg Nopoulos: KidsHD/ChANGE-HD 35:16

4+ y ago35:16

35:16

Dr. Peg talks about the ChAND-HD trial.Oleh WeHaveAVoice

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Jonathan Monkemeyer Rare Disease Day 53:27

4+ y ago53:27

53:27

Jonathan speaks to us about Rare Disease Day event as well as reusing existing drugs to treat or cure HD/JHDOleh WeHaveAVoice

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James Valvano: New Horizons After 2020 1:08:58

4+ y ago1:08:58

1:08:58

WeHaveAFace founder, James Valvano talks about his upcoming retirement and the future of WeHaveAFace.Oleh WeHaveAVoice

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Jimmy Pollard of CHDI: HD Education on a Global Scale 58:21

4+ y ago58:21

58:21

Jimmy Pollard talks about his experiences and imparts lessons to apply to HD caregiving.Oleh WeHaveAVoice

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Gene Veritas: CHDI Therapeutics Conference 53:48

4+ y ago53:48

53:48

Gene Veritas talks about his recent attendance at the CHDI Therapeutics Conference.Oleh WeHaveAVoice

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Karen Marais: HD in South Africa 58:34

4+ y ago58:34

58:34

Karen Marais talks about her relationship with her partner Chris who has Huntington's DiseaseOleh WeHaveAVoice

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Advocating in suicide prevention and other topics with Sarah Warehime and Dr. Herwig Lange 57:35

5y ago57:35

57:35

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.Oleh WeHaveAVoice

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A caregivers experience with behaviorial issues with Huntington's Disease 57:42

5y ago57:42

57:42

"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.Oleh WeHaveAVoice