WeHaveAVoice

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.

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 leading scientist called out exaggerated claims, and truth collided with marketing. This episode exposes the divide: real science vs. false hope. We dig into the hype machine, the backlash, and why Huntington’s families are being pushed into a letter-writing campaign to fix a mess they never deserved. If you’re tired of miracles being promised and ripped away, this is the show you’ve been waiting for.

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.

"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 the key to clarity, hope, and change? 

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

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

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

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

A short monologue about caregiver burnout.

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

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

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.

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.

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!

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

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

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

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

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

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

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.

Mary talks with Leanne and Kevin about yesterday and today

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

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

Cherry Chism talks about her husband leaving the Roche Trial

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.

Dr. Peg talks about the ChAND-HD trial.

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

WeHaveAFace founder, James Valvano talks about his upcoming retirement and the future of WeHaveAFace.