"We'll burn that bridge when we get to it." Our FSHD dad lets rip with his thoughts and opinions on all things FSHD in a whirlwind discussion with Dr. Jones trying to keep up. And bears; a little bit on bears.
"So shines a good deed in a weary world." It is our 40th episode, so we are recapping and reintroducing ourselves to the wider audience.
"What am I working on? Uhhh, I'm working on something that will change the world and human life as we know it." It's not teleportation, but, at your request, Drs Charis Himeda and Peter Jones discuss the recent announcement of Epic Bio's entry into the FSHD therapeutic space.
"Let’s win this one for all the small schools that never had a chance to get here." Everything is possible with talented people sincerely dedicated to a cause. Today MyFSHD welcomes one of the best, professional sports broadcaster Chris Carrino, founder of the Chris Carrino Foundation for FSHD and an FSHDer himself, to discuss his foundation, funding research, and his journey with FSHD.
"I've never had anything you doctors didn't try to cure with leeches." Kate Fowles hosts Dr. Channa Hewamadduma, Consulting Neurologist at the University of Sheffield Neuroscience Institute, as they discuss FSHD and clinical trial readiness.
"You stay classy, San Diego. I'm Ron Burgundy?"... "Dammit, who typed a question mark on the TelePrompter?... Anything you type, Burgundy will read!" Dr. Peter Jones talks recent developments in the FSHD space, DNA methylation, and answers questions on diagnostics and triggers of pathology.
"Here they are, back after their exclusive three-year tour of Europe, Scandinavia and the subcontinent." MyFSHD is back in Reno, but the work never stopped, and we are answering some common questions today.
"It's a bold strategy, Cotton. Let's see if it pays off for 'em." Coming to you from NYC where Dr. Peter Jones is with Ms. Nguyen Cam Thi talking about her personal journey with FSHD and the impact of a trip to the US and meeting with other patients, and we answer some listener questions on FSHD.
"Failure is not an option." Dr Peter Jones and MyFSHD Ambassador Ms Nguyen Cam Thi, an FSHDer from Hanoi Vietnam, discuss FSHD on World FSHD Day 2022.
"My (girl's) wicked smart." Today we talk with Ms Hannah Moore who is just finishing up 3 years of research on FSHD in the Jones lab at UNR, having made numerous significant contributions to the programs, and is heading off to graduate school.
"Fascinating! Semmi, look at this! America is great indeed. Imagine a country so free, one can throw glass on the streets!" Today we are recapping our biomarker discussion, answering some questions, and then heading to the airport.
“My mind is a raging torrent flooded with rivulets of thought cascading into waterfalls of creative alternatives”. Today’s podcast features Dr. Andreia Marcelino Nunes discussing FSHD biomarkers and IL-6 targeted therapeutic approaches for FSHD.”
"You get what you settle for." We talk a little bit about animal research in FSHD and answer some questions from the community.
"Yeah, well, that's just, like, your opinion, man." Brad Hasenjaeger, our FSHD Dad, fires questions at Dr. Peter Jones around the drug development pathway for FSHD. A casual back and forth, as we do, but always on things important to FSHD.
"As far back as I can remember I always wanted to be a gangster." It's Memorial Day Weekend in the USA and we are eternally grateful for those in the military who sacrificed their lives fighting for our freedoms. Today, Dr Peter Jones catches you up on diagnostics and discusses some of the differences between the muscular dystrophies and highlights the uniqueness of FSHD.
"Setting squirrel traps while elephants stomp you into pancakes." Dr. Jones addresses questions about FSHD diagnostics and stem cells.
"Never planned anything in my life." Drs. Peter Jones and Charis Himeda talk more small molecule and discusses news of the week as it relates to FSHD
"Hey wanna s'more?"... "S'more what?"... "No, do you wanna s'more?"... "I haven't had anything yet, so how can I have s'more of nothing?".... "You're KILLIN' ME SMALLS!" Drs. Peter Jones and Charis Himeda talk small molecule drug discovery pathways for FSHD.
Today we answer listener questions about FSHD research testing and AAV gene therapy.
"They've done studies you know -- 60% of the time it works all the time."... "That doesn't make any sense." We discuss the different types of antisense oligonucleotide (AON/ASO) technologies and how these can be used therapeutically for FSHD.
"What we have here is failure to communicate..." We discuss more on gene therapy viral vectors and answer a listener question about melatonin supplementation for FSHD
"So much time so little to do. Wait a minute. Strike that. Reverse it." Drs. Charis Himeda and Peter Jones go back over gene therapy technology for FSHD, including some of the remaining hurdles, and how technology has advanced over the years to meet the challenges.
Dr. Jones answers some of your questions from the week and reviews recent advances in science that relate to FSHD
Drs. Peter and Takako Jones discuss the ACE-083 trial and the basis of myostatin inhibition for FSHD, and go through the data showing that berberine, despite proof-of-concept studies showing it to be an inhibitor of DUX4 expression, is highly unlikely to be an effective treatment for FSHD.
Dr. Peter Jones catches you up on the week in FSHD.
"Sonny, true love IS the greatest thing in the world -- except for a nice MLT - mutton, lettuce and tomato sandwich, where the mutton is nice and lean and the tomato is ripe." Dr. Mark Tarnopolsky, the Director of the Neuromuscular and Neurometabolic Clinic at McMaster University in Hamilton, Ontario, Canada, sits down with Priscilla Sharun and Peter Jones to talk about how diet, certain supplements, and individual targeted exercise can improve muscle health with FSHD and aging.
Peter Jones recaps the week in FSHD; Solve FSHD, CRISPR, Morgan Hoffmann.
Peter Jones sits down with a true stakeholder in all of this and talks curing FSHD. Brad Hasenjaeger is a concerned father and husband who wants action.
Dr. Peter Jones gives a brief recap of the week and answers some questions from patients.
Chip Wilson, founder of Lululemon and an FSHD patient, sits down with Drs. Peter Jones and Charis Himeda to discuss his new $100 million venture, Solve FSHD, aimed at curing FSHD and age-related muscle decline.
