Results presented by Avidity of interim data from its Phase 1/2 clinical trial in FSHD were all the buzz at this year’s International Research Congress and FSHD Connect conference. We also wrote about it on our blog. If you missed those meeting, you could catch it in our FSHD University webinar on June 20 (World FSHD Day!) presented by Jeffrey Statland, MD, and the Avidity team. Previously referred to as AOC 1020, Avidity announced the drug’s new approved international nonproprietary name, delpacibart braxlosiran, a real tongue-twister mercifully abbreviated as del-brax. Watch the video above. Slides are available to download here:
I have been able to completely regain my strength and fully recover from bilateral Scapulo Thoracic Fusions with medical cannabis. See my results on Facebook with Cannabis and Facio Scapulo Humeral Muscular Dystrophy, Minnesota. I don’t trust any of the clinical trials at all.
Hello Gina:
I am 67 years old and was diagnosed with FSHD in 2023. I had right scapular thoracic fusion a few months back and am scheduled to have my left shoulder done this October. I lost a lot of muscle (about 35 lbs. over the last 2 years), and my biceps and triceps are very weak. How exactly does medical cannabis help strengthen weak musculature?
When I started with cannabis in 2015, I was weak, in chronic intractable pain, didn’t have any idea how I would see the benefits of both scapulo thoracic fusions. I tapered off all of my prescribed medications. In 2016 and 2017, I combined biofeedback, cannabis, and pool therapy to transition out of my ankle foot otthotic braces, and get my body moving again. In 2018, I combined occupational therapy and cannabis to rebuid my upper body from fusions. In 2019, I combined biofeedback, physical therapy with cannabis to refine my movement compensations. By 2021, I was fully recovered from fusions. My recovery took a long time because I had life threatening complications with both fusions of transfusion reaction with the first, and hemopneumothorax after the second. From 2021- present, I have really been able to open up the movement in my shoulders, even though shoulder movment is lost to achieve the goal with fusion. Cannabis use hypermethylates our DNA, and to me that is the ulitmate opposite action against Dux-4 expression’s hypomethylation. Dux-4 kills muscle cells through inflammation, cell death etc. Cannabis protects cells, and with hypermethylation of DNA, what comes fromt he genetic code can be properly expressed, instead of being underexpressed. I have used a full spectrum, THC-dominant edible suspension that’s cannabis oil with original terpenes for entourage effect, and MCT oil. I really think that combination is key for getting the DNA to express itself properly. I also use full spectrum vape oil. I have a Facebook page called Cannabis and Facio Scapulo Humeral Muscular Dystrophy, Minnesota, if you’d like to see photos of my transformation and improvements. Cannabis turns the ”I can’t do that.” with FSHD, into “I CAN do that.”, by allowing the therapies and such we might have to do, to actually work, to allow strengths to rebuild. I also went back to work part time out of total disability/divorce, and have developed my own art style. Cannabis and art, even if it’s really bad art, is so beneficial, creates a positive biofeedback loop.
Sorry I didn’t mention that I’m not on Facebook, so if you could email me your response I would greatly appreciate it. Thanks, Ira
I did a podcast in 2021. Here is a link. https://open.spotify.com/episode/44RZKgOw3u8tyXWNn0r9Nx
How do I contact you? Can u provide me your mail or insta I’d please?
Hi please suggest, where do we get treatment
See my results on Facebook with Cannabis and Facio Scapulo Humeral Muscular Dystrophy, Minnesota. I don’t trust any of the clinical trials at all. Cannabis is safer and more effective than anything Biopharma is trying to push…
Del-Brad looks really promising. How do you get in studies. I am 77. Just found out I have FSHD
I have a10 year old girl that was recently diagnosed with FSHD (less than 3 D4Z4 repeat units).
Her symptoms are advanced.
What is the outlook of the Del-Brax reaching children? Any FSHD research performed on the paediatric population?