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Jain Foundation Inc
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Добавлен 10 сен 2011
Yumi's story
The gift of time and talent, bestowed upon a community, is powerful.
Nila Gurusinghe, an artist who has generously created an advocacy piece for the dysferlin community, has completed the work and donated it to us, 100% pro bono. She gifted us this animated film in support and solidarity to all of those with dysferlinopathy and working to discover a cure.
We are proud to share with you this animated piece in which Yumi Shim's story is recreated, in an effort to connect, demonstrate the power of story telling; become engaged with the dysferlin specific community, and to call us all into action and build up the Dysferlin Registry numbers through awareness.
Yumi Shim's willingness to share her ...
Nila Gurusinghe, an artist who has generously created an advocacy piece for the dysferlin community, has completed the work and donated it to us, 100% pro bono. She gifted us this animated film in support and solidarity to all of those with dysferlinopathy and working to discover a cure.
We are proud to share with you this animated piece in which Yumi Shim's story is recreated, in an effort to connect, demonstrate the power of story telling; become engaged with the dysferlin specific community, and to call us all into action and build up the Dysferlin Registry numbers through awareness.
Yumi Shim's willingness to share her ...
Просмотров: 492
Видео
What is Limb Girdle Muscular Dystrophy type 2B/Miyoshi Myopathy?
Просмотров 56 тыс.7 лет назад
A very brief introduction of LGMD2B/Miyoshi Myopathy 1, collectively known as dysferlinopathies. Plavi Mittal, Brad Williams and others describe what the disease is, who it affects, and the importance of a cure no matter what stage of disease progression a person is experiencing.
Dr. Joseph Roche describes his exercise research for LGMD2B
Просмотров 2,7 тыс.8 лет назад
Note: This is not intended to be used as medical or physical therapy advice. Please consult your doctor before making any changes in your treatment plan. Dr. Joseph Roche describes the research he has done on mouse models of LGMD2B studying the effects of exercise.
Dr. Renuka Roche on occupational therapy for LGMD2B patients
Просмотров 9368 лет назад
Dr. Renuka Roche describes how to get the most out of occupational therapy at the 2016 2B Empowered patient conference. She recommends visiting www.liftseat4home.com for more information.
Brad explains terms you'll see on genetic reports
Просмотров 7098 лет назад
Ever wonder what all those terms on your genetic report mean? Watch this and you should understand it a lot better by the end!
Stephanie Garrett describes her journey
Просмотров 1,3 тыс.8 лет назад
Stephanie gives a moving talk describing her patient journey from experiencing the first symptoms of LGMD2B to being fully diagnosed. She hasn't let LGMD2B/dysferlinopathy stop her from living life to the fullest and is happily married with two beautiful children.
John Beaubien on finding resources for LGMD
Просмотров 2 тыс.8 лет назад
Want to know more about US programs that people with LGMD can use? John Beaubien describes his diagnostic odyssey and how he got the resources he needed to manage his symptoms.
Chris Anselmo on how to achieve your dreams
Просмотров 7318 лет назад
Chris speaks about how he didn't let LGMD stop him from fulfilling his dream to graduate from business school at the 2B Empowered Patient Conference 2016.
Jill Viles speaks at the 2B Empowered Conference
Просмотров 4458 лет назад
Jill Viles gave the keynote talk at the 2016 2B Empowered Patient Conference, telling the story of how she self-diagnosed herself with rare disease and discovered she shared a disease with Olympic medalist Priscilla Lopes-Schliep. #LGMDawareness #JainFoundation @jillviles
Yumi's Welcome at the 2B Patient Conference Reception
Просмотров 4418 лет назад
Yumi welcomes patients to the 2016 2B Empowered Patient Conference in Dallas, Texas.
Yumi describes her experiences living with LGMD2B
Просмотров 14 тыс.8 лет назад
Yumi describes her first symptoms and how she was eventually diagnosed with LGMD2B/Miyoshi myopathy as well as her experiences with pregnancy as a muscular dystrophy patient and how she is still living life to the fullest at the 2016 Jain Foundation Dysferlin conference.
ALDA - Automated LGMD Diagnostic Assistant
Просмотров 3189 лет назад
The Jain Foundation and the LGMD2I Research Fund have developed a free online tool to help guide physicians toward the most probable diagnosis. This tool predicts the most likely type(s) of LGMD/other closely related muscular dystrophies a patient may have based on clinical presentation and laboratory findings. jain-foundation.org/alda
Dr. Matthew Wicklund on Dysferlinopathies
Просмотров 2 тыс.9 лет назад
Dr. Matt Wicklund discusses the symptoms of LGMD2B/Miyoshi myopathy, how the disease is diagnosed, and what patients can do to help themselves.
Dr. Rufibach shared preliminary data from the Clinical Outcome Study
Просмотров 2969 лет назад
Dr. Laura Rufibach gives an update on the Clinical Outcome Study for Dysferlinopathy (COS) at the 2015 Jain Foundation Patient Conference.
Dr. Jerry Mendell discusses Gene Therapy
Просмотров 4,7 тыс.9 лет назад
Dr. Jerry Mendell discusses Gene Therapy
Patient Involvement in Dysferlinopathy
Просмотров 1,1 тыс.9 лет назад
Patient Involvement in Dysferlinopathy
Developing Treatments for Dysferlin Deficiency
Просмотров 9899 лет назад
Developing Treatments for Dysferlin Deficiency
Dr. Madhuri Hegde Discusses Genetic Sequencing
Просмотров 6159 лет назад
Dr. Madhuri Hegde Discusses Genetic Sequencing
Bliss Welch on physical therapy and LGMD2B
Просмотров 1,2 тыс.10 лет назад
Bliss Welch on physical therapy and LGMD2B
Brad Williams talks about patient advocacy - Speak Foundation Conference
Просмотров 60910 лет назад
Brad Williams talks about patient advocacy - Speak Foundation Conference
ALDA - Automated LGMD Diagnostic Assistant
Просмотров 4,5 тыс.11 лет назад
ALDA - Automated LGMD Diagnostic Assistant
Hopefully we found the treatment now
Now it’s 2024 Hopefully there’s a good news!
Please help me please i request for u
If you have a question for the Jain Foundation, you can send it to patients@jain-foundation.org and we will respond.
@@jainfoundation saisha parab suffering muscular Dystrophy please help sir please
@@ManjushaParab-g7y Hello Manjusha, if you are in India you can reach out to our India colleagues via email: rdastur@hotmail.com. If you are not from India, email us at patients@jain-foundation.org.
My son 2years 11month old affect in DMD (14 exon is deletion or duplication) in gentic report.
We are sorry to hear that your son is affected with DMD. The Jain Foundation focuses on another MD called Dysferlinopathy. Consider reaching out to groups who focus on DMD as they will be best able to speak to your needs. Also have a look at Sarepta Therapeutics as they are running clinical trials on this therapy. www.sarepta.com/disease-areas/duchenne-muscular-dystrophy
Mujay muscular distropy hai
Im lgmd 2b patient..plz help thighs not working no walk and now arm are affecting..plz help..also swallowing problems have started...10 years passed with this disease diagnosed in 2013 when i was 22 years
If you have a question for the Jain Foundation, you can send it to patients@jain-foundation.org and we will respond.
Very Important Information ❤❤❤
What about heart health? How can your heart stay healthy with no movement? I wish she mentioned the heart at least once. I am having problems with high blood pressure even after watching everything I eat. Some professionals say I need to move around, and them some like her say not to because I will lose my muscle faster. Very discouraging.
Hello! sir I have lgmd what type of exersises I do because my arms are weak I can't take them up above my shoulders
Hello I have LGMD2B, nearly entering year 3 since being diagnosed. Do we also experience lack of functionality and strenght in arms and fingers?
Hello Santiago, you can learn more about LGMD2B symptoms here: www.jain-foundation.org/patients-clinicians/understanding-dysferlinopathy/patients-clinicians-understanding-dysferlinopathy-symptoms-and-care-management/ . You can also register for the Dysferlin Registry, which is a registry specific to your disease: www.jain-foundation.org/patients-clinicians/how-to-take-action/dysferlin-registry/. If you have additional questions, please email us at patients@jain-foundation.org.
@@GoodByeSkyHarborLive Hello Shahroz, we checked with Dr Roche and this is his response: Data from dysferlin-deficient mice suggest that, magnetic resonance imaging (MRI) can detect changes in muscle within a few hours following eccentric muscle contractions, and that these changes intensify over the next several days -- REF: www.ncbi.nlm.nih.gov/pmc/articles/PMC4450316/ Furthermore, data suggest that these changes agree with histological (tissue-based) findings of muscle fiber damage and death, as well as inflammatory cell infiltration, which also occur over a time-course of several hours to several days. The ethics of intentionally performing injurious eccentric exercise would limit the kinds of studies that can be performed in humans with dysferlinopathies. Nonetheless, it may be safe to assume that the changes, which occur in dysferlin-deficient mouse muscle, may also occur in patients with dysferlinopathies, when physical activity involves intense, repeated, and injurious eccentric muscle contractions. The following publications provide additional information on physical activity in the context of nonlethal muscular dystrophies, such as dysferlinopathies: link.springer.com/chapter/10.1007/978-3-030-95884-8_3 pubmed.ncbi.nlm.nih.gov/32363622/
Hopefully 🙏 soon we will get some treatment for LGMD! Don’t loose hope !
In Jesus name, Amen 🙏
Apologies Yumi, I'm 6 years late. Excellently done. I am 53 years old, was diagnosed at 16 years of age, just after achieving my Karate Shodan / 1ste Dan / Black Belt. Very much like I didn't have the information back in 1985 in South Africa, so I adjusted very much like you had to. My husband and I have been married for 32 years, we have 2 adult children [son 28 yrs and daughter 26 yrs.] I have been power wheelchair user for 16 years now, manual wheelchair use for 10 years previously. Best wishes of success to you and everyone in your support foundation.
Hello Janeen, we thank you for the kind words about our foundation. We also have a registry specifically for those genetically diagnosed with LGMD2B. We have over a thousand members from all over the world who can connect and share with each other. If you would be interested in being a member, please complete a Dysferlin Registry online application: www.jain-foundation.org/forms/dysferlin-registry-application/.
My mother is suffering with worst disease last 27 years its so painful and helpless
Hi Kamran, if you are interested in additional information or have questions for us, please email us at patients@jain-foundation.org The Jain Foundation
I have it
Hi Billy, if you are interested in additional information or have questions for us, please email us at patients@jain-foundation.org The Jain Foundation
please ma'am help me
If you have a question for the Jain Foundation, you can send it to patients@jain-foundation.org and we will respond.
@@jainfoundation Thanks actually I have LGMD so I need power chair that is your most kindnees thanks
@@sakeenaanjum1268 This is not a service we provide. The Jain Foundation is focused on research for therapies for dysferlinopathy (LGMD2B). Please check with your local MD foundations for options.
@@jainfoundation ok can I come for physiothrapy in your jain Foudation please tell me
@@sakeenaanjum1268 That is not something we do. Please check with LGMD Info for resources: www.lgmd-info.org/
your speech gives me inspiration
Hi ma'am I need this type of chair but can't afford.
Help me sir 😭😭😭😭
If you have a question for the Jain Foundation, you can send it to patients@jain-foundation.org and we will respond.
I got cured permanently with dr iyaremoses herbal remedies on youtube#driyaremoses channel.
They all were once sporty/athletic which no one seems to know.
My Gf has it.Will love her .. support her till last breath.❤️❤️❤️ If you reach here and you are reading this muskan. . ..we will fight this together. Not you don't have ..WE HAVE IT TOGETHER ..
Today i saw ur comment ❤️ After 7mnth Thank you for the support darling I feel extremely blessed Already i have transferred my 50% of burden to u 😅😅 U know this or not?
Hi, hope you are doing well. Is there any information do you know about treatment or measure to reduce the intensity of lgmd2. Please help me with whatever information you have.
@@balatejabommeri9851 my comment got deleted
@@balatejabommeri9851 no treatment is available yet , and I'm doing well how is ur health Teja And how u doing?
@@meharkhatoon3038are you still able to walk?
I am very thanks for your informative guidelines sir I have LGMD2B and I am working as a nurse
I'm 59 yrs old a filipina and Last year i was diagnosed with LGMD ..and still undergoing a therapy until now😥
Hi May. Thank you for reaching out to us. Can you tell us what type of LGMD you are suffering from? Have you had genetic testing done to determine the specific subtype of LGMD? The reason this is important is because a lot of research is focused on the specific genes that are causing the different muscular dystrophies, so you would need to know which type you have to know which therapies to watch for in trials. Being genetically diagnosed is a requirement to be eligible for clinical trials, and also ensures the correct management of your medical care. If you would like to learn more, please email us at patients@jain-foundation.org.
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My husband was recently Diagnosed with this. This was a positive video and helped. I’m feeling so lost. Thankful for the Internet. ❤️
may I ask how was he diagnosed?
@@crystalr9633 firsts a muscle biopsy, then genetic testing discovered it
@@mauribrewster722 thank you I had a genetic test recently but no idea what it means just shows uncertain genes... going to be getting a biopsy soon
@@crystalr9633 it’s the dysferlin gene that they found that causes LGMD2b. His mom and dad each had a gene that gave him 2 and the disorder.
My husband was diagnosed last year with this. I need all the info I can get.
Im a 2B patient and its very inspiring everything you have said! Thank you for your time and your story 😊
Sir mujhe bhi musclar dystrophy h pichle sal se me india mp se hu plz call me 9340204027
If you are interested in additional information or have questions for us, please email us at patients@jain-foundation.org The Jain Foundation
Hi I’m 45 years old I was diagnosed with FSHD muscular dystrophy when I was 9. 2 years ago I stopped walking n now I’m in a chair needing pretty sure help with everything, been waiting 35 years for a cure.. but I’ll never lose hope, thank you for this video, I’d like to invite anyone reading this to come visit my channel 💕🙏🏼🥰
Thank you after more than 10+years of searching and for myself (as no one was helping me find the answer) I saved up and did some specific genetic tests and they came back positive for limb girdle muscular dystrophy, my type is rarer known as LGMD2L. It’s so relieving to finally have an answer after suffering for so long struggling to keep up with the other kids, valves burning and burning, feeling weak Not able to lift my arms for long and feeling my muscles tremble while trying to move boxes and brush my hair and everyone else saying it was just in my head, while the same not trying to help me exclude conditions and if I brought them up I was the crazy one...sad it had to be me that had to do it for myself as I gave up on my healthcare professionals even when I tried to work with them, studying in research myself, trying to exclude things. But I know now what I’m looking towards and what I can try and do to look after myself and also try to get a physiotherapist to try to keep me active and mobile for as long as possible as symptoms and signs already started for a decade or more. One day I’ll share my journey here on YT on my channel.
*calves
*commoner
How old are you? I am getting a biopsy soon. 20 years of no one listening. Until now
What genetic test did you have?
Are you still able to walk?
My son is suffering from Lgmd Musular dystrophy He is 13 yrs old How can l treat him How can l contact Plz do need full to My son
Please contact the Jain Foundation: patients@jain-foundation.org
Great to know people are actually out there fighting for us. I have limb griddle as well.
Hi Tamara, if you are interested in additional information or have questions for us, please email us at patients@jain-foundation.org The Jain Foundation
9694318809
My wife Shreya is also gone through the same and our doctor recommended the genetic test. But, our worry is, we have a baby girl, she is completely fine and active now. Can LGMD create any problem to our Baby, hence we are planning to test both Mother and daughter.
Great lecture.
My uncle suffering LGMD Musculler last 20years. I need Help ........
Belal khan kabse problem start huie thi unko?
Thank you mam... for sharing ur journey..... Hope everything will be fine.. and i too dignosed muscular dystrophy(LGMD)... and a special thanx to jain foundation for their efforts..and restored our hope.. 😍✌️🤝💪🙏 am from INDIA(odisha).
Where we can contact jain foundation in india
I am 30 yrs old facing symptoms of muscular dystrophy my cpk level is 4000 and I had done MLPA and biopsy both came normal I can't understand what to do
Please email patients@jain-foundation.org for any questions about muscular dystrophy or dysferlinopathy.
ابني مصلب بهذا المرض العمر سنه وثلاثة اشهر
Iam also registered in jain foundation shall i know the present status for lgmd2b .will you please reply.
Kanalımda kas hastalarının sesini duyurmak için video çektim kanalında paylaşırmısın izlensin destek verirmisiniz arkadaşlar
Kanalımda kas hastalarının sesini duyurmak için video çektim kanalında paylaşırmısın izlensin destek verirmisiniz arkadaşlar
God bless u.i have muscular Dystrophy and can no longer walk I did open my channel I hopes my journey n past experiences help others..would love to invite anyone reading this to come check me out of appreciate the support as well.. beautiful story😘 thank u for sharing.
♥️
Will this really work on DMD
Hi I have also lgmd 2b , how many years to we can expect to get treatment of this disease.
Please email patients@jain-foundation.org for any questions about dysferlinopathy. Thank you, The Jain Foundation
Tell me about it? 🤦♀️ Iv 🐝 waiting 35 years .but trying so hard to stay out of the depression I went through.
@@yanetcortez3789 There are several potential therapies currently in the pipeline. Our Dysferlin Registry has continuing updates on what is happening and what developments are on the horizon. If you are interested in being part of the registry, please send us an email at patients@jain-foundation.org.
@@jainfoundation hi madam I'm from tamilnadu age 37 male
@@SHASHIKUMAR-uo5pg Please email patients@jain-foundation.org for any questions about dysferlinopathy.
Very helpful Need to come India Mumbai
May God bless you guys
I have limb girdle muscular dystrophy Registered with Jain foundation I am able walk slowly can I take HGH hormones to reduce the progress of the disease
Mehul Gala hi I’m sorry to hear you have this too iv lived with it for over 30 years I’m already in a wheelchair I’d love to invite you n anyone reading to come check out my RUclips videos where I do share my story n how I got through the depression n anxiety I still feel n go through but mostly just trying to show others that I’m trying to live my best life as long as I have one🙏🏼, by just being positive n happy even if not everyday but let’s not let MD MS ALS or any other disease win! My RUclips name is Yanet cortez I kno there’s more than one lol but my pic should pop up👌n my instagram is Yanet.cortes.5 thank u n hope to see some of y’all hope your all having a good night 🌙😘
Do carriers of the gene mutation experience any symptoms?
If you are a patient, please contact patients@jain-foundation.org for assistance. We will respond to any other types of questions as quickly as we can. Sincerely, The Jain Foundation Team
Hi Chris,,I also have been living with MD LG for 35 years 2 out of my 3 children tested positive..they are 26 n 17 n as of now thank God no symtoms.
Hope your doing ok..I got a channel about living with MD i would appreciate u coming to check me out ask anything you'd like,,I want to help others too☺️🙏