The Myotonic Dystrophy Foundation (MDF) is the leading global advocate helping patients and families navigate the myotonic dystrophy (DM) disease process, and is often the first resource contacted by newly-diagnosed patients, their families, their social workers and their physicians around the world. For many international patients, the Myotonic Dystrophy Foundation is often the only resource they are able to locate, and MDF has provided assistance and support for people living with DM in more than 80 countries around the world.
MDF is a non-profit, 501(c)(3) organization based in Oakland, CA, and founded in 2007 by families living with myotonic dystrophy (DM).
Our vision is a world with treatments and a cure for myotonic dystrophy.
The mission of the Myotonic Dystrophy Foundation is Community, Care, and a Cure: + We support and connect the myotonic dystrophy community. + We provide resources and advocate for care. + We accelerate research toward treatments and a cure.
You can find the latest updates to the PepGen trial, including trial site recruiting status, on ClinicalTrials.Gov at clinicaltrials.gov/study/NCT06204809?term=pepgen&cond=myotonic%20dystrophy&rank=1
I have DM2 and i HATE my brain. I'm 63 and I've had depression for 2.5 years, ever since I had to get an ICD because of conduction issues caused by the DM2. At this point... I just wish it was over.
I’m 61 years old and have had Beckers Myotonia Congenita,it’s autosomal recessive,both of my parents have to have the same mutated faulty chromosome,clcn1 gene 🧬,potassium triggers my myotonia,along with panic attacks! I’m getting much weaker at my age, and no one in my family on my mother or dads side of the family have ever had my condition,my dad when alive had an elite athletic variant!
The problem with DM is that there are so many different types. I gave in my hands wrists and face. I have an enlarged heart I also suffer from sleep apnea all of this is due to DM
Check out the Myotonic Dystrophy Family Registry (MDFR), where you can create a profile and be notified of clinical trials you may be eligible for. Learn more and sign up at: myotonicregistry.patientcrossroads.org/
Hello folks🙇🎩 Could you estimate "how many" ? filing claimants whom are as grossly impaired as my 64 yr old Brother and who were ! Denied ! at initial stages again at recon appeal whom continue enduring waiting (my brother now at 2 years 11 months) HOW MANY are denied still waiting and are as impaired as my brother ?❓? He had an acute L m 1 MCA devastated stroke 2 yrs 11 months ago AND; since that day He Can't Speak Can't Write Can't gesture with any accuracy but poor Can't make informed decisions Is severely globally aphasic he presents with severe speech apraxia my Brother's unable to express wants desires needing He Can't communicate🙇 Well documented clearly defined anyone hearing about Gregory's trouble in obtaining lawfully entitled disability benefits are dumbfounded.....! and can't believe it's actually been 2 years 11 months and for all intents and purposes stalled out in an abysmal lost in wait Gregory was hospital discharged homebound hospices approved 45 day's from stroke and his treating hospital's would not directly discharge to me without first putting him in SNF because it was thought his level of care requires more than my capacities to handle myself 🙇it was unannounced to me a fast one over night but I had him brought home immediately as he went scared crazy and kept leaving trying to leave. My point is there is absolutely and I mean absolutely no doubt my brother is dire disabled He's assistance dependent heavy requiring 24 7 supervision incontinent x 2 (our washing machine dryer busted 25 months ago I'm laundering soiled bedding through kitchen sink blasting off the heavy out back with a garden hose 24 7 I'm exhausted I'm discouraged Scared Disability adjudicators authored a letter of explanation reading: "an uncooperative claimant unwilling to provide medical evidence of an alleged disability"🙇 Nobody's understanding that because they've had all his treating hospitals records they obtained them but I can't believe they've ever reviewed read them ?🙇 Most of the typical forms sent to my brother to read and fill out return🙇 He couldn't do work history or anything he's totally globally aphasic incapable of cognition anything near what it takes to do those kinds of things DDS wasn't understanding this I guess they get mad in response threatening to go without it and it'd be in your best interest to fill out our forms 🙇 More to the nail head you see my brother isn't aware of any of this ? Craziness...🙇 day by day he can't he doesn't know and I'm so feeling awful for him I'm on fixed income with MS and we can't resource his basic needs. It's sad and hurting I'm sole care assist here we're rural we're...! Slipping I'm loosing it it's so physical painful but no skilled nursing facility period I'm scared I'm OVER pushing it deliberately and I am in high risks for major acute events.....🙇 He's listing criteria for 11.04 A 11.04 B 111.04 111.08 A B 11.08 A B umm o His claim is currently stalled in at the Skyline Towers 15th floor in Leesburg Pike VA and I'm he's bed bound and weak frail tonic clonic seizures monthly it's we Need needed an appropriate adjustable hospital bed in rails we see him enduring that tattered out junk sofa a twin mattress on floor aside that filth WHY WON'T THEY HELP HIM ❓ why🙇 I need things for him it's 24 7 it's 2 yrs 11 months I'm numb my system I'm in danger to of possible medical events that'd put us in worse than now it's possible I look like death My Brothers everything I just love him Too Pieces❤💛 🙇✝➕ 🛌 Thanks for SHARING!! Sincerely Bradley Parker
I know this was posted 2 years ago, In going to look for something more current but I would volunteer for a trial, all rushed considered including death, and if that was the case I'd be ok with it if it would progress research faster to help others.
I am 47 with DM1 I just received a pacemaker cant raise my arms above my head . Tired all the time but I still am able to get out and go camping in a RV and I am thankful for that.
This study/clinical trial seems to be looking for outcomes on reducing myotonia symptoms. IE. Measuring muscle relaxation times Will there be any intentional focus on reducing the dystrophy side? IE. Regaining or growing muscle fiber.
I’m am so tired all the time. I am literally trying to get up to go to work smh. I am 29 years old and feel normal outside and literally do not feel normal inside. Just tired of being tired!
Foundation how to get member ship because myself is suffering from mytonic destrophy loving in Pakistan and since long time today age 45old JavedTariq Pakpattan Pakistan reply
I came across this post while trying to discover what could be ailing me. I am feeling very bad for these people and I wish them ease in their conditions. Thank you all for sharing your challenges.
