MyFSHD: Recent Episodes
Peter L Jones, PhD
MyFSHD is about education and personal empowerment for the worldwide facioscapulohumeral muscular dystrophy (FSHD) community. Here we have discussions and commentary hosted by FSHD researcher Peter Jones, PhD, on many things of interest to the FSHD community. Learn about the science behind the different FSHD therapeutic approaches, FSHD pathology, family genetics and FSHD diagnostics. We will discuss upcoming clinical trials and what to look forward to. You will get to understand how you can be better prepared, become involved, and help contribute to defeating FSHD once and for all.
"Show me the money!" Brad our Angry Dad sits down with us and asks the questions on his mind about the Fulcrum results and others going forward.
"I always tell the truth, even when I lie." Today we are joined by our CRISPR Goddess and cover the Fulcrum Therapeutics REACH phase 3 clinical trial data release and discuss our journey with Fulcrum from the beginning. While very disappointing from several aspects, in the end a lot of benefit truly has been gained for the FSHD field and we are grateful for Fulcrum's contributions to help others going forward. And there are many others coming along, this is the beginning and not the end for FSHD therapeutics.
"There's a time for daring and there's a time for caution, and a wise man understands which is called for." Brad our Angry Dad is back with some questions for us on the Avidity FORTITUDE AOC 1020 phase 1/2 trial interim data report and some muscle building.
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"Whatchyou talkin' 'bout Willis?" In a field where every press release is met with unsubstantiated hoopla and proclamations of BREAKTHROUGH! to fire you up to shake you down, we finally have some real news. We provide our evaluation of Avidity's public interim report on their FORTITUDE AOC-1020 phase 1/2 trial.
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"You're messing with the wrong guy!!!!" We expand a bit more on the utility of the FSHD-like pig model and then discuss the science behind and implications of p38 inhibition for FSHD.
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"We don't get a lot of things to really care about." So, you think you are interested in science, eh? Well, let's see how the sausage is made. Today we share our experience generating the FSHD-like minipig models, which will be key tools for testing and advancing better FSHD therapeutics and developing methods for building back your muscles.
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"Come out to the coast, we'll get together, have a few laughs..." The holiday season we discuss the recent FDA approved CRISPR therapy for sickle cell disease and some dynamics of methylation.
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"As I leave my competition respirator style, climb the ladder to success escalator style." Today we have the Jaegercast, but first we continue our discussion about apabetalone, a new candidate drug for FSHD.
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"I don't know how I'm going to live with myself if I don't stay true to what I believe." We evaluate the recent published work describing apabetalone, a small molecule drug from Resverlogix Corp that has been around for awhile and in clinic for other indications and is now being assessed more seriously as a potential therapeutic for FSHD. Overall, while lacking in some areas, this initial study is generally positive and supports that it is a new candidate worthy of further evaluation.
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"I am sick and tired of the entire western world knowing how my kidneys are functioning!" We discuss current and upcoming FSHD clinical trials and touch a little bit on funding.
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"Farmer Hoggett knew that little ideas that tickled, and nagged, and refused to go away should never be ignored, for in them lie the seeds of destiny." We are in Australia promoting FSHD awareness with Parliament and to gather government support for FSHD diagnostics and clinical trial infrastructure, as well as catching up with many of our Australian friends.
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"Life has meaning only in the struggle. Triumph or defeat is in the hands of God. So let us celebrate the struggle!" With the FDA approval of the first gene therapy for DMD and clinical trials for FSHD in all stages of planning and performance, we take a moment to discuss the history of the DMD gene therapy path to approval as it relates to FSHD and address the important, yet oft ignored, concept of Therapeutic Misconception.
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"It's human nature to lie. Most of the time we can't even be honest with ourselves." At MyFSHD is is always FSHD Day. We continue the conversation around therapeutic modalities and clinical trials, hopefully providing additional context for clarification, or just digging a deeper hole. You tell us.
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"Apes don't read philosophy." "Yes they do, Otto, they just don't understand it!" We're here to answer your questions and help you understand all things (FSHD) on your mind.
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"We can rebuild him. We have the technology. We can make him better than he was. Better, stronger, faster." Today we are at the Biologic Scaffolds for Regenerative Medicine Symposium to discuss novel ways to potentially help FSHDers maintain strength and slow down pathology. Additional technology being presented by be applicable to help regain muscle mass after therapy. Joining us is one of the best FSHD advocates around, Emma Weatherley from FSHD Global Research Foundation in Australia. And we drop the newest track from Jaeger the Kid!
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"We Are Unique, Gentlemen, In That We Create Ourselves Through Long Years Of Rigorous Training, Sacrifice, Denial, Pain." Today we focus on our worldwide efforts to help FSHDers everywhere.
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Roy: "This is everything, ain't it? This is the choice it comes down to - this is our immortality." Romeo: "You don't need to be thinking immortality - you need to be thinking hit the 7 iron!" Dr Charis Himeda joins us to discuss recent news on stem cells, losmapimod, gene therapy, and antisense for FSHD.
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"You just put your pickle on everybody's plate, college boy, and leave the hard stuff to me." We talk a little more about funding, hopefully providing some clarity, then bring on our Angry Dad for some questions, and then bring it home with another new track from Jaeger.
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"Sorry, Vern. I guess a more experienced shopper could have gotten more for your seven cents." Rare disease day is the last day of February, which got us thinking about what really needs to be done to get over the line. We also answer listener questions about animal models and the Avidity, myostatin inhibition, and cell therapy trials.
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"If you're afraid of getting a rotten apple, don't go to the barrel. Get it off the tree."
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"Come on in, grab a beer. Don't cost nothing." We have been podcasting about all things FSHD and realize that we have a lot of new listeners over the past year so we want to take this opportunity to catch everyone up on what the MyFSHD podcast is all about. You may have noticed that we are a bit different. We are not asking for money and we are not selling you anything, just real talk from experts in all things FSHD to help you understand and navigate the space with knowledge. On the science side, we discuss a little more Avidity and Vita cell therapy.
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"Why, sometimes I've believed as many as six impossible things before breakfast." Experimental therapies designed specifically for FSHD are finally arriving for trial in the clinic (i.e., in people). Today we discuss the upcoming Phase 1/2 clinical trial from Avidity using their antibody oligo conjugated siRNA designed specifically to knockdown the DUX4 mRNA in FSHD.
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"Do you ever have déjà vu, Mrs. Lancaster?" "I don't think so, but I could check with the kitchen" We will discuss some cool new pig data and how we are going about making sure our FSHD-like minipig models will be made right and properly characterized to be useful for testing FSHD therapeutics and muscle building strategies. As you know, the devil is always in the details and so far pigs are looking pretty darn good!
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"I've been going to this high school for 7-1/2 years. I'm no dummy." As 2023 gets underway, let's check in and see where the field stands - in our opinion, of course.
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"Life isn't like in the movies. Life..... is much harder." Whatever you end up doing, love it. And we love working every day on the problem of FSHD, educating others about the science, helping people learn about themselves, and informing the community of advancements. We're back and going strong, starting Season 2 with a discussion on the future of clinical trials and therapies, as requested by you.
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"Remember no man is a failure who has friends." We catch up with a few friends in this holiday season as FSHD research plows ahead.
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"I want four fried chickens and a Coke". Dr. Charis Himeda joins us as we discuss some encouraging recent data from Sarepta for one of their DMD gene therapy trials and from Avidity for their myotonic dystrophy phase I/II trial and how it all potentially impacts FSHD. In addition, we revisit the potential (or lack there of) for placental or umbilical cord derived stem cell therapy for FSHD.
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"Never mind manoeuvres, always go at them". Dr. Bob Bloch from the University of Maryland School of Medicine joins us to discuss his development of the human FSHD muscle xenograft mouse model that is a key tool in the pre-clinical testing pipeline for FSHD therapeutics and biomarker discovery.
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"You're messing with the wrong guy!" Happy Thanksgiving to our friends in the US, and for everyone else, it is always a good time to remember and give thanks for those you care about and who care about you. For us, that is the worldwide FSHD community. Today we have Brad, our angry dad, and discuss accessibility issues for safety and dealing with roadblocks in research.
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“The most terrifying day of your life is the day the first one is born. Your life as you know it is gone … But they learn how to walk, and they learn how to talk, and you want to be with them. And they turn out to be the most delightful people you will ever meet in your life.” We understand many of you participate in our FSHD research testing to learn more about yourselves and especially at risk family members. Here we discuss more about the procedure and results and interpretations. In addition, some more on CRISPR approaches to FSHD and a short FSHD minipig update.
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"Seek not to know the answers, but to understand the questions." Get to know Maryam Farooqi of the Jones Lab for FSHD. She is the first half of the team that performs all the FSHD research testing and is key for a number of other FSHD projects (i.e. FSHD-like mice and minipig projects).
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"Advertising has us chasing cars and clothes, working jobs we hate so we can buy s--- we don't need." We discuss the publicly available data for the Fulcrum Open Label Extension of the ReDUX4 trial and the recent CRISPR-activation "N-of-one" trial in DMD and what that means for FSHD gene therapy.
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"I would like, if I may, to take you on a strange journey." Ally Roets and Kristin Zwickau from the Early Onset FSHD Parent Group join us today to discuss what we need to do to get trial ready for those under 18 years old.
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"Roads? Where we're going, we don't need roads." We address listener questions on the cost of research and bringing new therapeutics to market and the debate over testing kids for FSHD when they are in an FSHD family but don't show any overt symptoms.
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"Was it over when the Germans bombed Pearl Harbor? Hell no!" We're just getting started at tearing this disease down, with more money being invested and more companies getting into the space seemingly every week. Jaeger drops another new track as we're trying to keep you up to speed with developments with Fulcrum, Solve FSHD, Vita Therapeutics, and more.
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"Just how bad is it?" "It's a fire. All fires are bad." We sit down with our FSHD Mom and fire inspector Dad and talk FSHD clinical trials. Also, it's fire prevention month, check your smoke and carbon monoxide detectors, make a plan in case of fire, know your two exits, have a place to meet, and make sure to discuss your plan with your family and/or roommates. Let's make sure we all make it to see this thing through to a cure.
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"Oh, you should never, never, doubt what nobody is sure about." Fulcrum has the losmapimod phase III trial going and now both Roche and Avidity just announced their upcoming clinical trials for FSHD.
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“Well, I guess if a person never quit when the going got tough, they wouldn’t have anything to regret for the rest of their life." No regrets here, no matter how tough, we'll never quit till the job is done. Today we finish up on the Chocolate Ball, talk more on Dyne's announcement, and go back over DNA methylation as a diagnostic and prognostic for FSHD.
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"That's not a knife...... that's a knife!" Drs. Peter and Takako Jones attend the 11th Annual Sydney Chocolate Ball to raise funds for FSHD Global Research Foundation, but we still talk about FSHD news of the day, which is DNA methylation (no surprise) and a big disappointment from Dyne Therapeutics.
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"Faced with overwhelming odds I'm going to have to science the s*** out of this." We celebrate our 50th podcast in style with Maryam Farooqi taking over the hosting duties (and the kitchen) as we discuss all things FSHD.
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"The secret's in the sauce." We discuss some recent news in the neuromuscular disease space and FSHD publications on cell therapy and biomarkers.
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"Your scientists were so preoccupied with whether they could, they didn't stop to think if they should." Our CRISPR Goddess Charis talks with host Peter and answers your questions on CRISPR, eventually.
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"She made me realize just how precious wild places are." Our visiting medical student from South Africa, and fellow FSHDer, Kari Cilliers, joins Dr. Jones to discuss her time in the US working on FSHD.
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"If you have one bucket that contains 7 gallons and one bucket that contains 2 gallons, how many buckets do you have?" Our FSHD dad asks questions on research and funding priorities, biomarkers, MRI, and what we are doing as a field to make sure we know if a drug works or not in trial. Plus, the world premiere of a new track from Jaeger!
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“Invention, my dear friends, is 93% perspiration 6% electricity 4% evaporation and 2% butter scotch ripple.” Natalie Cooney and Emma Weatherley sit down with MyFSHD to talk about how initiatives from the FSHD Global Research Foundation are helping the FSHD community in Australia and around the world, and also the upcoming Sydney Chocolate Ball.
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"Who's gonna turn down a Junior Mint? It's chocolate, it's peppermint..... it's delicious!" Tamara and Michael Gottlieb join us to discuss how nutrition, vitamins, dietary supplements, and lifestyle adjustments have greatly improved their muscle health in the FSHD and non-FSHD members of their family. Tamara is one of the founders of the "FSHD - supplements, nutrition, and peer support" Facebook group.
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"The creatures outside looked from pig to man, and from man to pig, and from pig to man again; but it already was impossible to say which was which." Peter talks a bit more about the FSHD-like minipigs being developed for therapeutics and muscle regeneration.
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"Go the distance." Jenny Hasenjaeger of MyFSHD sits down with Ben Brittain to discuss his FSHD and what he intends to do about it.
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"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.
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"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.
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"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.
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"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.
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"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.
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"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.
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"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.
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"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.
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"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.
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"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.
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"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.
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“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.”
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"You get what you settle for." We talk a little bit about animal research in FSHD and answer some questions from the community.
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"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.
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"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.
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"Setting squirrel traps while elephants stomp you into pancakes." Dr. Jones addresses questions about FSHD diagnostics and stem cells.
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"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
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"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.
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Today we answer listener questions about FSHD research testing and AAV gene therapy.
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"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.
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"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
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"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.
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Dr. Jones answers some of your questions from the week and reviews recent advances in science that relate to FSHD
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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.
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Dr. Peter Jones catches you up on the week in FSHD.
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"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.
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Peter Jones recaps the week in FSHD; Solve FSHD, CRISPR, Morgan Hoffmann.
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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.
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Dr. Peter Jones gives a brief recap of the week and answers some questions from patients.
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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.
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Peter Jones answers recent patient questions and addresses issues relating to FSHD
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Drs. Takako and Peter Jones discuss how they made the FLExDUX4 FSHD-like mouse model that is used around the world for FSHD therapeutic development and preclinical testing.
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Free flowing commentary on all things FSHD
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Dr. Julie Dumonceaux, Professor at University College London Great Ormond Street Institute of Child Health in London, England, discusses her lab's FSHD work and overall FSHD efforts in the UK with MyFSHD UK Ambassador Kate Fowles.
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Dr. Charis Himeda joins us again to talk all types of FSHD therapeutic approaches
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A primer on epigenetic gene and genome regulation and how it relates to FSHD
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Dr. Alexandra Belayew from the University of Mons in Belgium and the discoverer of DUX4 sits down with volunteer MyFSHD Ambassador Jenny Hasenjaeger to discuss the discovery of DUX4, the Fulcrum Losmapimod trial, antisense, and a little bit of everything FSHD.
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A short primer on the genetic differences and similarities between FSHD1, FSHD2, and FSHD1+2 just to make sure we are all up to speed.
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Dr. Peter Jones sits down with Dr. Charis Himeda to discuss her invention of CRISPR-inhibition for FSHD, some of the bumps along the way, and its ultimate therapeutic potential and constraints. In addition, other CRISPR technology that is being developed for FSHD is discussed.
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Dr Peter Jones explains genetic diagnostics for FSHD1 and FSHD2. This covers various methods for FSHD deletion testing through the new epigenetic research testing, and the difference between CLIA-approved testing and research testing. The final 20 minutes takes you through your FSHD genetic report if you participated in the epigenetic research testing at the Jones Lab at UNR.
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Dr. Peter Jones sits down with Dr. Ryan Wuebbles to discuss his journey with FSHD first as a patient and now as a researcher. Covers some FSHD basics, research approaches, and how you can be the best advocate for FSHD.
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