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WeHaveAVoice

by 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.

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Episodes

  1. Could Huntington's families be forced into institutions? The truth behind the new DOJ memo!

    What does the new Justice Dept. memo really mean for people living with Huntington's Disease and their families? We separate fact from fear in this episode.

  2. Positive Eugenics - Should we worry?

    That's not a rhetorical question. I'm not asking to provoke. I'm asking because something is shifting in our culture, and people with genetic disease are the first to fell it.

  3. AMT-130 Update: Breaking through the hype

    AMT-130 was sold as the breakthrough Huntington’s families have waited generations for — a one-shot gene therapy that “changes everything.” Researchers celebrated, headlines exploded, and desperate families finally believed they might be saved. But behind the hype, the FDA slammed the brakes, a...

  4. AMT-130 and the 75% Slowdown: What Just Changed for Huntington’s Disease—and What Hasn’t

    We Have A Voice Radio dives into the AMT-130 news for Huntington’s—what this one-time, brain-delivered gene therapy is, what the reported “75% slowdown” really means, what’s next for approval, and the hard truths on access and cost.

  5. The Blue Within

    "The Blue Within" dives into the surprising potential of methylene blue—a simple dye with extraordinary promise—in the fight against Huntington’s disease and other neurodegenerative disorders. Blending science, human stories, and community voices, this episode asks: could one drop of blue hold…

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  6. Chair By The Window: A Huntington's Disease Story

    A Huntington's Disease Story about Ellen, abandoned by everyone she loved.

  7. Huntington's Isn't Rare...It's Ignored

    A short monologue about how Huntington's disease is being ignored.

  8. The Endless Scroll – Huntington’s Disease in the Age of Doomscrolling

    The modern phenomena of Doomscrolling and its affect on Huntington's Disease. A short monologue.

  9. Nicotine Patches & Huntington’s Disease: Is There Hope?

    A short monologue concerning the possible use of nicotine patches for Huntington's Disease.

  10. The House That Doesn't Sleep

    A short monologue about caregiver burnout.

  11. The Kids Who Carry Too Much

    Child caregivers are no longer uncommon and the numbers are rising.

  12. 44% of Men Die Prematurely

    44% of men die prematurely in Canada. Most likely higher in the US. But what about men with Huntington's Disease?

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

    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.

  14. Rare Disease Day

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

  15. New Guidelines to Revolutionize Care for Huntington's Disease Patients

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

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

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

  17. Erin Paterson - Huntington's Disease Heroes

  18. WeHaveAFace! What's next?

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

  19. Worthlessness

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

  20. Coffee Talk with Kevin and Jen (Chat #7)

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

  21. Coffee Talk with Kevin and Jen (Chat #6)

    Jen and Kevin talk about hope, testing and other topics

  22. Coffee Talk with Jen and Kevin (Chat #5)

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

  23. Kevin speaks about memories and nurturing relationships

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

  24. Coffee Talk with Jen and Kevin (Chat 4)

    Jen gets an unexpected call and discussion ensues.

  25. Coffee Talk with Jen and Kevin (Chat #3)

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

  26. Coffee Talk with Jen and Kevin (Chat #2)

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

  27. Coffee Talk with Jen and Kevin (Chat 1)

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

  28. James Valvano and what's next for WeHaveAFace

    James speaks about the Project Change and an array of topics

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

    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

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

    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

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

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

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

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

  33. WeHaveAVoice: HDSA - HD Parity Act with Jennifer Simpson!

    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!

  34. WeHaveAVoice Radio - HD Warrior, John Howard Poetry!

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

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

    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…

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  36. Jimmy Pollard - Finding Nana's Smile

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

  37. James Valvano: Season 1 of WeHaveAFace TV

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

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

    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...

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

    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...

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

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

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

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

  42. Coping with separation anxiety during Covid-19 pandemic

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

  43. #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.

  44. A trip down memory lane with Mary Etta Robertson

    Mary talks with Leanne and Kevin about yesterday and today

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

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

  46. WeHaveAVoice: Discussing the Coronavirus (COVID-19)

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

  47. Cherry Chism: When you leave the Roche clinical trial

    Cherry Chism talks about her husband leaving the Roche Trial

  48. Louise Vetter, President and CEO of HDSA: HD Trial Finder

    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.

  49. Dr. Peg Nopoulos: KidsHD/ChANGE-HD

    Dr. Peg talks about the ChAND-HD trial.

  50. Jonathan Monkemeyer Rare Disease Day

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

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ABOUT THIS SHOW

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.

HOSTED BY

WeHaveAVoice

Frequently Asked Questions

How many episodes does WeHaveAVoice have?

WeHaveAVoice currently has 129 episodes available on PodParley. New episodes are automatically indexed when they're published to the podcast feed.

What is WeHaveAVoice about?

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...

How often does WeHaveAVoice release new episodes?

WeHaveAVoice publishes regularly with 129 episodes available. Check the episode list for the typical release schedule.

Where can I listen to WeHaveAVoice?

You can listen to WeHaveAVoice on PodParley by clicking any episode. We provide an embedded audio player for direct listening, and you can also subscribe via your preferred podcast app using the RSS feed.

Who hosts WeHaveAVoice?

WeHaveAVoice is created and hosted by WeHaveAVoice.
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