WeHaveAVoice

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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 broad…

WeHaveAVoice


    • Feb 2, 2025 LATEST EPISODE
    • infrequent NEW EPISODES
    • 27m AVG DURATION
    • 289 EPISODES


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    Latest episodes from WeHaveAVoice

    HD Research: What's in store for 2025 and beyond according to AI

    Play Episode Listen Later Feb 2, 2025 31:59


    Kevin 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.

    Rare Disease Day

    Play Episode Listen Later Feb 13, 2024 12:32


    Host, Kevin Jess, talks about Rare Disease Day which is just around the corner

    New Guidelines to Revolutionize Care for Huntington's Disease Patients

    Play Episode Listen Later Dec 21, 2023 13:05


    Kevin Jess talks about recent papers published and about to be published concerning changing the diagnostic criteria for HD

    Bunny Clark and the 10th Annual Huntington's Heroes Walk

    Play Episode Listen Later May 23, 2023 13:38


    Bunny Clark talks about The Walk for Huntington's Disease May 28th

    Erin Paterson - Huntington's Disease Heroes

    Play Episode Listen Later Apr 21, 2023 22:20


    WeHaveAFace! What's next?

    Play Episode Listen Later Mar 16, 2023 20:10


    Kevin Jess announces charity closings and discusses what's next for WeHaveAFace.

    huntington's disease kevin jess wehaveaface
    Worthlessness

    Play Episode Listen Later Sep 29, 2022 21:11


    Kevin Jess talks about the feeling of worthlessness and how the media may drive this feeling.

    worthless worthlessness kevin jess wehaveaface
    Coffee Talk with Kevin and Jen (Chat #7)

    Play Episode Listen Later Jul 1, 2022 38:35


    Jen and Kevin discuss possible implications of the overturning of Roe v Wade for the Huntington's Community

    Coffee Talk with Kevin and Jen (Chat #6)

    Play Episode Listen Later Jun 27, 2022 60:22


    Jen and Kevin talk about hope, testing and other topics

    Coffee Talk with Jen and Kevin (Chat #5)

    Play Episode Listen Later Jun 16, 2022 44:05


    Kevin and Jen talk about a number of things but are focusing on the upcoming International Education Day, June 25

    Kevin speaks about memories and nurturing relationships

    Play Episode Listen Later Jun 14, 2022 28:16


    Kevin talks about memories of his wife Sheila and how it's important to nurture friendships

    Coffee Talk with Jen and Kevin (Chat 4)

    Play Episode Listen Later Jun 11, 2022 44:42


    Jen gets an unexpected call and discussion ensues.

    Coffee Chat with Jen and Kevin (Chat #3)

    Play Episode Listen Later Jun 2, 2022 47:56


    Jen and Kevin chat about disappointments over the years in the Huntington's Disease community

    Coffee Chat with Jen and Kevin (Chat #2)

    Play Episode Listen Later May 25, 2022 45:24


    Jen and Kevin chat about the death of a loved one and strategies leading up to and after death.

    Coffee Talk with Jen and Kevin (Chat 1)

    Play Episode Listen Later May 17, 2022 39:12


    Kevin and Jen kick off a series of coffee talks concerning Huntington's Disease

    James Valvano and what's next for WeHaveAFace

    Play Episode Listen Later Mar 22, 2022 34:42


    James speaks about the Project Change and an array of topics

    huntington's disease wehaveaface james valvano
    Dr. Herwig Lange and James Valvano discuss why it is necessary to change the diagnostic criteria for Huntington's Disease

    Play Episode Listen Later Nov 25, 2021 57:05


    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=ZJs8EHEPMag

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

    Play Episode Listen Later Nov 23, 2021 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 - #PatientsLikeMe

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

    Play Episode Listen Later Nov 8, 2021 44:39


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

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

    Play Episode Listen Later Oct 14, 2021 23:52


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

    WeHaveAVoice: HDSA - HD Parity Act with Jennifer Simpson!

    Play Episode Listen Later May 11, 2021 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!

    WeHaveAVoice Radio - HD Warrior, John Howard Poetry!

    Play Episode Listen Later May 7, 2021 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 #YouAreLoved

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

    Play Episode Listen Later May 3, 2021 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 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

    Kas Rodriguez: A Juvenile Huntington's Disease Story of Daniel

    Play Episode Listen Later Mar 12, 2021 42:39


    Kas Rodriguez talks about her experience with JHD in regards to her 8 year old son Daniel.

    Jimmy Pollard - Finding Nana's Smile

    Play Episode Listen Later Nov 30, 2020 33:38


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

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    James Valvano: Season 1 of WeHaveAFace TV

    Play Episode Listen Later Oct 18, 2020 64:31


    Kevin Jess interviews James Valvano about the first season of WeHaveAFace TV

    huntington's disease kevin jess wehaveaface james valvano
    James Valvano: Season 1 of WeHaveAFace TV

    Play Episode Listen Later Oct 18, 2020 64:31


    Kevin Jess interviews James Valvano about the first season of WeHaveAFace TV

    huntington's disease kevin jess wehaveaface james valvano
    Dr. Finn of the Mayo Clinic: How and when to talk to children about Huntington's disease.

    Play Episode Listen Later Aug 8, 2020 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 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

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

    Play Episode Listen Later Aug 8, 2020 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 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

    Dr. Bird of the University of Washington speaks about the HDSA Centers of Excellence

    Play Episode Listen Later Aug 4, 2020 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? 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.

    Dr. Bird of the University of Washington speaks about the HDSA Centers of Excellence

    Play Episode Listen Later Aug 4, 2020 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? 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.

    Monday Virtual Support Group with Jen Almeida

    Play Episode Listen Later Jul 24, 2020 5:27


    Jen gives a public service announcement concerning our new virtual support group on Mondays.

    Monday Virtual Support Group with Jen Almeida

    Play Episode Listen Later Jul 24, 2020 5:27


    Jen gives a public service announcement concerning our new virtual support group on Mondays.

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

    Play Episode Listen Later Jul 21, 2020 39:22


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

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

    Play Episode Listen Later Jul 21, 2020 39:22


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

    Update on the Wish List group with Jen Almeida

    Play Episode Listen Later Jul 19, 2020 8:32


    Kevin Jess speaks with Jen Almeida from the Connecticut Chapter of WeHaveAFace about "Blessings for HD and JHD Warriors

    Update on the Wish List group with Jen Almeida

    Play Episode Listen Later Jul 19, 2020 8:32


    Kevin Jess speaks with Jen Almeida from the Connecticut Chapter of WeHaveAFace about "Blessings for HD and JHD Warriors

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

    Play Episode Listen Later Jun 14, 2020 43:21


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

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

    Play Episode Listen Later Jun 14, 2020 43:21


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

    Coping with separation anxiety during Covid-19 pandemic

    Play Episode Listen Later Apr 30, 2020 58:19


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

    Coping with separation anxiety during Covid-19 pandemic

    Play Episode Listen Later Apr 30, 2020 58:19


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

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

    Play Episode Listen Later Apr 29, 2020 52:04


    #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

    Play Episode Listen Later Apr 29, 2020 52:04


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

    A trip down memory lane with Mary Etta Robertson

    Play Episode Listen Later Apr 23, 2020 60:46


    Mary talks with Leanne and Kevin about yesterday and today

    A trip down memory lane with Mary Etta Robertson

    Play Episode Listen Later Apr 22, 2020 60:46


    Mary talks with Leanne and Kevin about yesterday and today

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

    Play Episode Listen Later Apr 14, 2020 42:08


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

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

    Play Episode Listen Later Apr 14, 2020 42:08


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

    WeHaveAVoice: Discussing the Coronavirus (COVID-19)

    Play Episode Listen Later Mar 20, 2020 55:18


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

    WeHaveAVoice: Discussing the Coronavirus (COVID-19)

    Play Episode Listen Later Mar 20, 2020 55:18


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

    Cherry Chism: When you leave the Roche clinical trial

    Play Episode Listen Later Mar 19, 2020 44:08


    Cherry Chism talks about her husband leaving the Roche Trial

    Cherry Chism: When you leave the Roche clinical trial

    Play Episode Listen Later Mar 19, 2020 44:08


    Cherry Chism talks about her husband leaving the Roche Trial

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