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WeHaveAVoice

Author: 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 broadening social awareness and acceptance is paramount!
Visit: www.WeHaveAFace.org/Radio for more information.
116 Episodes
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Rare Disease Day

Rare Disease Day

2024-02-1312:32

Host, Kevin Jess, talks about Rare Disease Day which is just around the corner
Kevin Jess talks about recent papers published and about to be published concerning changing the diagnostic criteria for HD
Bunny Clark talks about The Walk for Huntington's Disease May 28th
Kevin Jess announces charity closings and discusses what's next for WeHaveAFace.
Worthlessness

Worthlessness

2022-09-2921:11

Kevin Jess talks about the feeling of worthlessness and how the media may drive this feeling.
Jen and Kevin discuss possible implications of the overturning of Roe v Wade for the Huntington's Community
Jen and Kevin talk about hope, testing and other topics
Kevin and Jen talk about a number of things but are focusing on the upcoming International Education Day, June 25
Kevin talks about memories of his wife Sheila and how it's important to nurture friendships
Jen gets an unexpected call and discussion ensues.
Jen and Kevin chat about disappointments over the years in the Huntington's Disease community
Jen and Kevin chat about the death of a loved one and strategies leading up to and after death.
Kevin and Jen kick off a series of coffee talks concerning Huntington's Disease
James speaks about the Project Change and an array of topics
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 (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 speaks with Kevin about her 5 1/2 year struggle with fertility amidst having a diagnosis of HD
Kevin Jess speaks about his wife Sheila, how they met up until her recent passing.
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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