HD Insights Podcast Huntington Study Group

More relevant to academics than members of community

I hope that the first episode is not indicative of the entire show... while the interview with Dr. Claassen was enjoyable - he seems like an incredible person who I’d love to get to know! - it didn’t have much particularly interesting content to a person who is a member of an HD family. While getting to know a physician more in depth as far as hobbies like viola or golf or their academic history is pleasant, I’d be more interested in spending 30-40 minutes of my time listening to how people are addressing issues in the HD community. What issues do the HD community currently face?

Is there any difficulty getting the sample sizes needed for drug development? Is the tendency for at risk individuals to not get genetically tested a challenge for drug developers? Maybe in interview with a patient who was actually in a clinical trial.

What about the threats to the ACA and pre-existing conditions? Loopholes in GINA?

What about the topics of financial and family planning decisions for genetic positive people?

What about status updates to the Huntington’s Parity Act? Interviews with members of congress?

My father is in late stages and I have recently been through genetic testing. I want to know about issues and topics that are relevant to me. I’m not interested in hearing about physician’s personal interests or topics that would mostly only be interesting to academics.

And maybe this is supposed to be more of a podcast for researchers — if that is true, then please just indicate it as such on the podcast description. Oh, and also, focus on relevant and interesting research results.