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

Rare Disease Day

February 13, 2024 • 12 mins

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

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New Guidelines to Revolutionize Care for Huntington's Disease Patients

December 21, 2023 • 13 mins

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 and the 10th Annual Huntington's Heroes Walk

May 23, 2023 • 13 mins

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

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Erin Paterson - Huntington's Disease Heroes

April 21, 2023 • 22 mins

None

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WeHaveAFace! What's next?

March 16, 2023 • 20 mins

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

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Worthlessness

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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Coffee Talk with Kevin and Jen (Chat #7)

July 1, 2022 • 38 mins

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

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Coffee Talk with Kevin and Jen (Chat #6)

June 27, 2022 • 60 mins

Jen and Kevin talk about hope, testing and other topics

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Coffee Talk with Jen and Kevin (Chat #5)

June 16, 2022 • 44 mins

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 speaks about memories and nurturing relationships

June 14, 2022 • 28 mins

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

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Coffee Talk with Jen and Kevin (Chat 4)

June 11, 2022 • 44 mins

Jen gets an unexpected call and discussion ensues.

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Coffee Talk with Jen and Kevin (Chat #3)

June 2, 2022 • 47 mins

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

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Coffee Talk with Jen and Kevin (Chat #2)

May 25, 2022 • 45 mins

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

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Coffee Talk with Jen and Kevin (Chat 1)

May 17, 2022 • 39 mins

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

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James Valvano and what's next for WeHaveAFace

March 22, 2022 • 34 mins

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

November 25, 2021 • 57 mins

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

November 23, 2021 • 29 mins

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

November 8, 2021 • 44 mins

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 candidly about the recent death of his wife Sheila

October 14, 2021 • 23 mins

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

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WeHaveAVoice: HDSA - HD Parity Act with Jennifer Simpson!

May 11, 2021 • 31 mins

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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WeHaveAVoice

Episodes

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.css-r6mb8g{margin:0;word-break:break-word;display:-webkit-box;-webkit-box-orient:vertical;box-orient:vertical;-webkit-line-clamp:1;overflow:hidden;}New Guidelines to Revolutionize Care for Huntington's Disease Patients

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

Erin Paterson - Huntington's Disease Heroes

WeHaveAFace! What's next?

Worthlessness

Coffee Talk with Kevin and Jen (Chat #7)

Coffee Talk with Kevin and Jen (Chat #6)

Coffee Talk with Jen and Kevin (Chat #5)

Kevin speaks about memories and nurturing relationships

Coffee Talk with Jen and Kevin (Chat 4)

Coffee Talk with Jen and Kevin (Chat #3)

Coffee Talk with Jen and Kevin (Chat #2)

Coffee Talk with Jen and Kevin (Chat 1)

James Valvano and what's next for WeHaveAFace

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

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

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

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

WeHaveAVoice: HDSA - HD Parity Act with Jennifer Simpson!

Popular Podcasts

Rare Disease Day

New Guidelines to Revolutionize Care for Huntington's Disease Patients