Ай бұрын
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@stevewise75 2 күн бұрын
I’m a big fan of “packable” jackets since they are usually super light. I was wondering if you had any suggestions for a good packable rain jacket (not a fan of umbrellas because of my low arm strength) I was looking at the REI Houdini
@debilove9396 5 күн бұрын
I enjoyed the podcast 😀
@jamesgoldstien1468 9 күн бұрын
👏👏👏👏👏🙏🙏🙏🙏THANK YOU
@bobski1151 9 күн бұрын
I am from Brussels wishing you two the best in finding cures.
@Offshore-boats-NZ-Australia 10 күн бұрын
These are our heros for the future well done! Let's hope for a treatment in 2025
@brandonflesner1955 18 күн бұрын
Been living with FSHD for my whole life. It would be absolutely life changing for someone to slow or even stop the process.
@stevewise75 18 күн бұрын
Avidity should have their therapy out in 2027. Arrowhead/sarepta should follow soon after
@maryvonnedecloquement8957 22 күн бұрын
Je suis française et j'ai été diagnostiquée seulement en 2022 (FSHD de type 2). Mes symptômes sont apparus alors que j'avais 18 ans. J'ai 61 ans aujourd'hui. Je marche encore. Les muscles atteints sont ceux de la partie haute de mon corps = dos, épaules, biceps, abdos.
@Pallavi_Sinha07 29 күн бұрын
Great explanation would be an understatement! Needed to revise the mechanism for my exams. Perfect video 👌
@darnellgrimsley7779 Ай бұрын
Hi, from Palestine, Texas
@KAMALSINGH-wo4zs Ай бұрын
When will provided to the patient of patient FShd
@ginaesrar9945 Ай бұрын
I am living proof that hypermethylation of SMCHD1 with medical cannabis use can silence or quiet Dux-4 expression, and have rebuilt my entire body. I would say that is MUCH SAFER and more effective than ANYTHING in clinical trial, that is funded by BiopHARMa companies...
@KAMALSINGH-wo4zs Ай бұрын
Really reform from fshd patient please tell me about it
@ginaesrar9945 Ай бұрын
@@KAMALSINGH-wo4zs I joined my state's cannabis program in 2015, after my second scapulo thoracic fusion, first one was done in 2014. I had life threatening complications with both. After all of that, I got myself into warm pool therapy, occupational therapy for upper body, biofeedback therapy, my last phases were physical therapy and biofeedback together to work out movement compensations. In 2017, I transitioned out of my Ankle Foot Orthotic braces, by 2021, I was fully revovered from bilateral Scapulo Thoracic Fusions. I also used to have chronic intractable pain associated with FSHD. I have also went back to work part time starting in 2022, when I hadn't worked at all and had to give up my career in 2003. The transformation of my body took several years, but it was so worth it, rather than depending on some BiopHARM company to come up with a clinical trial that I knew I wasn't ever going to particpate in. I basically took a different path, and did a cannabis study on myself. My results are unlike what anyone has experienced. I didn't have any negative side effects, require invasive procedures, or prescription medications.
@ginaesrar9945 Ай бұрын
I conquered my Dux-4 expression with cannabis. Much safer and more effective than anything in clinical trial. Clinical trials are poison, and I'm tired of being lied to by BiopHARMa.
@Darodkdkd Ай бұрын
To: The Avidity Biosciences Team Dear Avidity Biosciences Team, My name is HJ, and I am a patient living in South Korea with facioscapulohumeral muscular dystrophy (FSHD). I would like to express my deepest gratitude for your dedicated research and development of treatments for FSHD. Your efforts provide hope and courage not only to me but also to countless patients around the world. Thanks to your hard work, we, as patients, are one step closer to the dream of having effective treatments. I was particularly encouraged to hear about the clinical trials for Delbrux, and this news fills me with great hope and anticipation. It has also inspired me to hold on to my courage and determination to live life fully, despite the challenges. Your research has become a source of strength for many of us. I am fully aware that your success stems from the dedication and passion of every individual in your organization, from the leadership and research teams to the administrative staff and everyone involved in the clinical trials. I extend my heartfelt gratitude and respect to all of you for your tireless efforts on behalf of patients worldwide. I sincerely hope that your projects achieve great success, providing new opportunities for those suffering from FSHD across the globe. As we approach the holiday season, I wish you and everyone at Avidity Biosciences a warm and joyful Christmas and a prosperous New Year. May the coming year bring good health, fulfillment, and great achievements to you and your team. Once again, thank you for your unwavering dedication and hard work. Wishing you a Merry Christmas and a Happy New Year!
@iurydemelloaraujo2024 Ай бұрын
interesting! It would be great to have one that helps your thighs, for getting up and sitting in another chair, or getting up from a chair and sitting on the toilet, in the car, whatever. daily commutes.
@stevewise75 Ай бұрын
Awesome stuff! A cheaper to make drug alternative to avidity sounds very attractive. Hope you can find a partner asap
@ginaesrar9945 Ай бұрын
I rebuilt my body against everything FSHD did to debilitate it with medical cannabis and a multi-disciplinary approach. I would never ever trust any of these drugs in clinical trial for any reason. The MRNA, DNA altering nanoparticles are nothing but poison. I would not want that infused in any way to my body. Organizations commercialize clinical trials, and they always fail. In 2015, I stopped sitting around and waiting for a cure. I joined Minnesota's medical cannabis program, after my second Scapulo Thoracic Fusion. In 2017 I transitioned out of my Ankle Foot Orthotic braces, by 2021, I was fully recovered from bilateral Scapulo Thoracic Fusions. Cannabis and FSHD, Minnesota. Cannabis is safer and more effective. My study on myself had no negative sie effects, didn't require any invasive procedures, or prescription medications.
@mertgnrful Ай бұрын
I am fshd on progrss. From turkey. Im an ex pro boxer... Im on growth hormone. And on mild body buıldıng. It started at my 35s. Now ım 45. Growth hormone protect me from beıng clumsy. I train 4 tımes a week. I dont burn out my body but ı push just about to. I . just wondering ıf anybody use growth hormone to equalise the fshd... ı feel like ıt works. My question is ıf anybody tried it before me.
@AtlisWerks Ай бұрын
Awesome!
@roberthumphreysjr3421 Ай бұрын
Great content, thanks Tim. I hope everyone keeps Rowing! Thanks Amy and Kayleigh. Great work on getting BetterLife Up and running. Now lets get to 1000! 😄
@colleensteffes7081 2 ай бұрын
At the 42 minute mark, it indicates that only FSHD 1 is available for preimplantation genetic testing. This might be old. Dr. Peter Jones is very good and I believe can test for FSHD 2. Might be worth looking into! There might be others…this is 3 years old right now.
@henryharris5597 2 ай бұрын
Frank, I just came across your session and finding it very helpful. Thanks for the presentation.
@deepalishukla8981 2 ай бұрын
Hello ma'am, i am a researcher from India. I am have started my work on fshd research. I need some training in this field and i will be greatful if you can connect me with some lab, who are working on the same. Thanks.
@JimHasArt 2 ай бұрын
Has anyone taken the routine you describe in your video and converted it to a checklist for us dummies who can't remember to exercise but are good at following checklists? :)
@stevewise75 2 ай бұрын
An absolute genius
@iurydemelloaraujo2024 3 ай бұрын
treatments or cure... haha...ha quanto tempo vão nos deixar assim? recebi a sentença da FSHD em 2005, disseram que em cinco anos teríamos um tratamento, passou os cinco, de novo disseram em cinco anos, de novo passaram e o que disseram? em dez anos...🙄😒😴😵💫😕😫😨😭🤬😞☠
@neerajsinghbjpnetalucknow2793 3 ай бұрын
Very Important Information ❤❤❤
@Jennifer-gr7hn 3 ай бұрын
Yeah, we're trying.....Where to find them?!?!?! I've been trying to find one for my poor mom! I'm a nurse and I'm very discouraged for her and heart broken more is not being done, supplements suggested, what to do what not to do....etc. WHERE...TO..find help? Thanks.
@AlmaHake-b2r 3 ай бұрын
Wolff Gardens
@marekmiescicki9911 3 ай бұрын
Great interview. greetings from Poland with Fshd
@maryvonnedecloquement8957 3 ай бұрын
Sans pouvoir lever les bras, certains mouvements ne sont pas adaptés... Je suis atteinte de FSHD de type 2 et j'ai 61 ans. Je suis française.
@darnellgrimsley7779 3 ай бұрын
I’m 72 years old and my disease has progressed and I have been in such a “slump”. I also fell and have messed up my left arm and shoulder. I have no one to talk to. I will try to stay in tuned with you and your group!! What a Godsend!!🙏🙏❣️. I’m from a small town in east Texas. Thanks.
@AlokAsthana1954 3 ай бұрын
Tried it. Feels effective. Thanks
@RichardVoss-f8u 4 ай бұрын
Harris Avenue
@willmatthews8542 4 ай бұрын
Lol, Kate is so brat (EDIT: I’m too old to know how to use that properly, but I think I managed to make it flattering?). I feel sarcasm’s an unavoidable consequence of FSHD, just with the sheer volume of interactions when people can’t read our faces right. I’m a Portland local and excited to discover this playlist and that Mitch is local, too! I’ve seen a local physical therapist Marvin Smith a few times who’s followed a lot of the literature and treats another family member with FSHD.
@JosephThomas-o5x 4 ай бұрын
Jocelyn Valley
@93mgee 4 ай бұрын
What’s the recommended dosage
@jamesgoldstien1468 4 ай бұрын
MICHIGAN HAD OURS YESTERDAY- Whats going on with the FSHD SOC fb page?? I can’t find it, but I can find all the others
@colleen.g 4 ай бұрын
Got to see Good Bad Things this weekend on Veeps, after learning about it from Hannah and Shane from Squirmy & Grubs! I was really blown away. I can't believe the director and lead are new to making features! Amazing! The performances were so grounded, the script felt natural and draws you in, and the look is beautiful. Looking forward to seeing an even wider distribution in the future so more people can see it! :)
@maryvonnedecloquement8957 4 ай бұрын
Top ! Il n'y a pas d'initiative de ce genre en France. Je suis atteinte de la FSHD de type 2. 👍
@Rohitsingh-gy3qy 4 ай бұрын
Amezing sir,,,,,sir please update for FSHD Type 1 Tritment
@KAMALSINGH-wo4zs 4 ай бұрын
When will come proper treatment for FSHD deseas
@lisacridland3654 4 ай бұрын
I have used a reformer & loved it but my strength /weight training has definitely helped me more
@ginaesrar9945 4 ай бұрын
BiopHARM research is nothing but poison!!! Cannabis and Facio Scapulo Humeral Muscular Dystrophy Minnesota. STOP donating to pHARM funded research which is only designed to kill us all anyway. pHARMa has NEVER cured anything anyway!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
@KAMALSINGH-wo4zs 4 ай бұрын
When will come treatment of FSHD deseas please tell us about it
@WandaLarson-u3o 4 ай бұрын
Bonita Key
@nahidkhan-pg1qy 4 ай бұрын
Hi mam I am suffering FSHD pls help me
@jamesgoldstien1468 4 ай бұрын
I’ve had MRis.. what do those help to understand..??