WeHaveAVoice

WeHaveAVoice

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.

Episodes

February 13, 2024 12 mins
Host, Kevin Jess, talks about Rare Disease Day which is just around the corner
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Kevin Jess talks about recent papers published and about to be published concerning changing the diagnostic criteria for HD
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Bunny Clark talks about The Walk for Huntington's Disease May 28th
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None
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March 16, 2023 20 mins
Kevin Jess announces charity closings and discusses what's next for WeHaveAFace.
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September 29, 2022 21 mins
Kevin Jess talks about the feeling of worthlessness and how the media may drive this feeling.
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Jen and Kevin discuss possible implications of the overturning of Roe v Wade for the Huntington's Community
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Jen and Kevin talk about hope, testing and other topics
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Kevin and Jen talk about a number of things but are focusing on the upcoming International Education Day, June 25
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Kevin talks about memories of his wife Sheila and how it's important to nurture friendships
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Jen gets an unexpected call and discussion ensues.
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Jen and Kevin chat about disappointments over the years in the Huntington's Disease community
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Jen and Kevin chat about the death of a loved one and strategies leading up to and after death.
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Kevin and Jen kick off a series of coffee talks concerning Huntington's Disease
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James speaks about the Project Change and an array of topics
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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=ZJs8EHEPMag
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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 - #PatientsLikeMe
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Erin speaks with Kevin about her 5 1/2 year struggle with fertility amidst having a diagnosis of HD
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Kevin Jess speaks about his wife Sheila, how they met up until her recent passing.
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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!
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