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The Myositis Association (TMA)
США
Добавлен 13 май 2009
The Myositis Association (TMA) is Support, Education, Research, and Advocacy.
TMA is the leading worldwide organization for people with myositis, a rare autoimmune disease of the muscles.
TMA provides patient education and advocacy, facilitates patient support groups, hosts an international annual patient conference, engages the medical community in educating clinicians about these rare diseases, and funds research into the causes, treatments, and eventual cures for myositis.
TMA is the leading worldwide organization for people with myositis, a rare autoimmune disease of the muscles.
TMA provides patient education and advocacy, facilitates patient support groups, hosts an international annual patient conference, engages the medical community in educating clinicians about these rare diseases, and funds research into the causes, treatments, and eventual cures for myositis.
TMA Myositis Research Insights Featuring Kanneboyina Nagaraju, DVM, PhD
Do you use prednisone? You won’t want to miss this webinar!
TMA’s Myositis Research Insights webinar series features a distinguished member of the myositis research community who will discuss their research and its impact on the myositis community.
Dr. Kanneboyina Nagaraju (Raju) is an immunologist specializing in autoimmune myositis. His research, in collaboration with Drs. Eric Hoffman and John McCall led to the creation of a new prednisone-like anti-inflammatory drug that eliminates many of the challenging side effects of steroids.
Vamorolone is the first drug approved in both the US and Europe for the treatment of Duchenne muscular dystrophy. Dr. Raju expects myositis to be the next targ...
TMA’s Myositis Research Insights webinar series features a distinguished member of the myositis research community who will discuss their research and its impact on the myositis community.
Dr. Kanneboyina Nagaraju (Raju) is an immunologist specializing in autoimmune myositis. His research, in collaboration with Drs. Eric Hoffman and John McCall led to the creation of a new prednisone-like anti-inflammatory drug that eliminates many of the challenging side effects of steroids.
Vamorolone is the first drug approved in both the US and Europe for the treatment of Duchenne muscular dystrophy. Dr. Raju expects myositis to be the next targ...
Просмотров: 221
Видео
Impact of Social Connections on Patient Health and Resilience - TMA Women of Color Affinity Group
Просмотров 6421 день назад
This webinar hosted by the TMA Women of Color Affinity Group will explore how connecting socially can help improve health outcomes, increase life expectancy and lessen anxiety and depression. Shadé Mallory is a speaker and autoimmune advocate. After being diagnosed with lupus, she became a strong voice for women of color living with autoimmune diseases. She leads outreach programs, organizes ro...
Pregúntale al Doctor - Reumatología, con la Dra. Francisca Bozán presentado por TMA Adelante! grupo
Просмотров 6821 день назад
Pregúntale al Doctor - Reumatología, con la Dra. Francisca Bozán presentado por TMA Adelante! grupo de afinidad Originally aired Monday, May 20, 2024
Meet your TMA Affinity Groups!
Просмотров 128Месяц назад
The term “affinity group” is used as a bringing together of people who share some commonality. TMA believes in creating safe spaces for communities that share more in common than their myositis diagnosis. Safe spaces can provide a break from judgment, unsolicited opinions, and having to explain yourself where there is no understanding. They allow people to feel supported and respected. This is ...
Community Orientation Webinar for Adult Dermatomyositis Patients - Prepare for EL-PFDD Meeting
Просмотров 156Месяц назад
Ready to shape the future of Adult Dermatomyositis care? This informative webinar is your key to participating in the upcoming EL-PFDD meeting on June 7th. We covered everything you need to know: the meeting’s purpose, its impact on the myositis community, and how YOU can share your story beforehand. To register for the meeting, go to dermatomyositis-el-pfdd.org/
Prevalence of Urinary and Bowel Incontinence among Individuals with Myositis
Просмотров 184Месяц назад
Prevalence of Urinary and Bowel Incontinence among Individuals with Myositis - a Cross-sectional Study Watch this special presentation hosted by TMA's Women with IBM Affinity Group to hear about the recent findings from researcher Dr. Genevieve Simkovics and Kerry Maclaurin, the patient who initiated this project, from Fiona Stanley Hospital’s Department of Neurology in Murdoch, Australia. This...
2024 Myositis Awareness Month Kickoff Webinar
Просмотров 117Месяц назад
Join the staff of TMA as they kickoff a full month of activities to raise awareness for myositis in the month of May! Receive information on how to observe Myositis Awareness Month with your family, friends, and community! This originally aired May 1, 2024.
Amplifying the Voice of Myositis Patients at FDA hosted by TMA and TMA Women With IBM Affinity Group
Просмотров 57Месяц назад
Amplifying the Voice of Myositis Patients at FDA: Applying Patient Advocacy to Advance Rare Disease Research at Government Agencies As patients living with forms of myositis, how can we make our voices heard to advance research and find a cure? TMA and our TMA Women with IBM Affinity Group are excited to host Julia (Julie) C. Tierney, JD, Deputy Center Director for Strategy, Policy, and Legisla...
Disclosing your Diagnosis to your Employer
Просмотров 69Месяц назад
TMA Raising Awareness Clinic: Disclosing Your Diagnosis to Your Employer Raising Awareness Clinics provide useful tools and tips for how you can raise awareness about myositis and its challenges among your community and beyond. These sessions are usually held during May, Myositis Awareness Month, but the advice works all year long! Deciding if, when and how to disclose a diagnosis to your emplo...
TMA Ask the Doc with Dr. Tahseen Mozaffar
Просмотров 239Месяц назад
TMA Ask the Doc featuring TMA Board of Directors Liaison to Medical Advisory Board Dr. Tahseen Mozaffar originally aired on May 22, 2024 Have a burning myositis question that can’t wait for your next doctor appointment? Dr. Tahseen Mozaffar has answers for you. Dr. Mozaffar is professor and chair of neurology, professor of orthopedic surgery, professor of pathology and laboratory medicine, and ...
Inflammatory Myopathy: Integrating Lifestyle Medicine to Optimize How You Feel
Просмотров 386Месяц назад
Dr. Neha Bhanusali, an Associate Professor of Medicine, is a triple board-certified integrative rheumatologist. She explores how diet, mindset, sleep, exercise, and stress impact inflammation in diseases like gout, inflammatory arthritis, myositis and lupus. By combining allopathic and complementary approaches, she provides holistic, personalized care. Her training includes a residency at Mt Si...
TMA Meet & Greet with Medical Advisor Board Chair Dr. Namita Goyal
Просмотров 124Месяц назад
Originally aired on April 11, 2024 TMA leaders want to connect with you! Our new Meet & Greet series continues with the chair of TMA’s Medical Advisory Board (MAB), Dr. Namita Goyal, joining board chair, Laurie Boyer, and executive director, Paula Eichenbrenner. During this informal gathering, we will share information about the TMA research program and ask for feedback from the community. Lear...
Rhonda Rogers GCOM 2024 Patient Story
Просмотров 2412 месяца назад
During the 2024 Global Conference on Myositis (GCOM) that took place in Pittsburgh in March, a group of global myositis patient organizations, led by TMA, wanted to be sure the patient's voice was heard throughout the scientific sessions. This video was included in the presentation by Dr. Kendrea Garand from the University of Pittsburgh to the nearly 400 attendees at this scientific conference....
Eli Older GCOM 2024 Patient Story
Просмотров 2122 месяца назад
Eli Older tells his harrowing story of going from healthy to nearly dying from interstitial lung disease to the 400 attendees at the 2024 GCOM conference.
Raising Awareness While Preserving Energy - Preparing for Myositis Awareness Month April 2024
Просмотров 2842 месяца назад
Raising Awareness While Preserving Energy - Preparing for Myositis Awareness Month April 2024
Nutrition and More - TMA Empowerment Clinic with The Wellness Kitchenista Jessica DeLuise Jan 2024
Просмотров 1943 месяца назад
Nutrition and More - TMA Empowerment Clinic with The Wellness Kitchenista Jessica DeLuise Jan 2024
TMA APC 2023 Cancer and Its Implications for Myositis
Просмотров 4354 месяца назад
TMA APC 2023 Cancer and Its Implications for Myositis
TMA Meet and Greet Featuring New Board Chair and New Executive Director Feb 2024
Просмотров 594 месяца назад
TMA Meet and Greet Featuring New Board Chair and New Executive Director Feb 2024
The Why and How of Legislative Advocacy featuring EveryLife Foundation Feb 2024
Просмотров 454 месяца назад
The Why and How of Legislative Advocacy featuring EveryLife Foundation Feb 2024
Let's Travel - Making Disability Air Travel More Accessible hosted by TMA Women With IBM Feb 2024
Просмотров 3244 месяца назад
Let's Travel - Making Disability Air Travel More Accessible hosted by TMA Women With IBM Feb 2024
TMA Ask The Doc Encore Webinar with Dr Rohit Aggarwal February 2024
Просмотров 3024 месяца назад
TMA Ask The Doc Encore Webinar with Dr Rohit Aggarwal February 2024
TMA Women of Color Affinity Group Celebrates Black History Month 2024
Просмотров 514 месяца назад
TMA Women of Color Affinity Group Celebrates Black History Month 2024
Dr. Iago Pinal-Hernandez presents to TMA Men Managing Myositis Affinity Group January 2024
Просмотров 3085 месяцев назад
Dr. Iago Pinal-Hernandez presents to TMA Men Managing Myositis Affinity Group January 2024
Ask The Doc Rheumatology with Dr. Julie Paik November 2023
Просмотров 3635 месяцев назад
Ask The Doc Rheumatology with Dr. Julie Paik November 2023
Myositis Research Webinar with Dr. Nicole Voet January 2024
Просмотров 2895 месяцев назад
Myositis Research Webinar with Dr. Nicole Voet January 2024
Myositis Research Webinar featuring Drs. Marie Holmqvist and Valerie LeClair January 2024
Просмотров 1245 месяцев назад
Myositis Research Webinar featuring Drs. Marie Holmqvist and Valerie LeClair January 2024
Ask The Doc with Dr Rohit Agarwal January 10, 2024
Просмотров 3895 месяцев назад
Ask The Doc with Dr Rohit Agarwal January 10, 2024
TMA Empowerment Clinic Military Veterans with Myositis VA Claims
Просмотров 4127 месяцев назад
TMA Empowerment Clinic Military Veterans with Myositis VA Claims
I watched Dr, Todd Cohen's presentation live last year and It put me on an intense investigation of my s-IBM. I served in the Air Force from 1970 to 1974, with basic at Lackland, and ATC school it Keesler in Biloxi. I walked the air gun shot line many times in prep for overseas deployment. I recall that they only wiped the gun nozzle with an alcohol swab if somebody flinched and the skin cut left blood on the gun. I am 75 and my first symptoms were misdiagnosed as ALS. A muscle biopsy and a referral to Mayo Clinic cleared me of the ALS imminent death sentence, but at the time they had no other suggestions to explain my leg weakness and foot drop. After four years of decreasing muscle strength and more pronounced foot drop, I went back to Mayo Clinic and this time they said I most likely had IBM and there was no known cause and no known cure. Fro my own research I am convinced that Dr, Cohen is on the most promising research track. After watching the video please follow up with this webpage at the University of Utah. <learn.genetics.utah.edu/content/basics/prions/> s-IBM is a PRION disease! If you are a vet, share your story and petition the VA to recognize a possible connection to your service and IBM.
How can I get the slides? Thank you
At 20:47 Mike makes his grand entrance👍
ASys, DM. My first treatment was IV steroids then orally. Rituxan every week added. Ambulation deteriorated and skin symptoms increased with each dose of rituxan.
Thank you Dr Raju for all of your hard work over the years to develop this drug for us patients. And thank you to your collaborators and team members as well.
I hope juvenile myositis will be an early candidate for a vamorolone trial.
Patient here. So for off-label use, how does the price compare to prednisone? From what I've read, the testing and clinical trials of vamorolone were funded by governments, plus disease and patient charities. Is that because it is out-of-patent? If the vamorolone price is in line with prednisone, would US insurance companies care which is prescribed? And since prednisone is so cheap, if vamorolone is only a few times the price many patients will willingly pay out-of-pocket to avoid the side effects. Background, I've had what turned out to be anti-HMGCR necrotizing autoimmune myopathy since 2006. At 100 kg body weight I started on 80 mg/day for several months, then tapered, and then on between 5 and 20 mg/day of prednisone for the next 14 years. It's pushed my weight up to 120 kg and eventually gave me type 2 diabetes. So my drug insurance will now paying for diabetes-related medications for the rest of my life. Because of the costs of diabetes, glaucoma, and osteoporosis, it seems to me that at the right price, vamorolone would be a no-brainer economic choice even for insurance company claims adjusters and accountants. (Once it has been tested enough to be prescribed either off-label.)
This is no sound ! There is no audio !
It is fixed now. Thanks !
How do I get bracelet?
Social connectedness is so necessary-great topic ❤
Thank you for your story! my husband was diagnosed last November.
Hello from Kenai Alaska!
Thank you for providing this series!!! So important.
Lifestyle interventions are important for myositis also!
I was diagnosed with I B M app 10 years ago. I was given an opportunity for phone interview for app 45 minutes. But I was rejected for the test as I was diagnosed with thrombocytopenia 35 years ago and was fully treated the same year. Can someone please elaborate on this? Thank you.
Missouri City,Texas
Good evening
Polymyositis
26:22 Probably that is a result of the medicine (Corticosteroid) suppressing the immune system I would think. At least, I know of one example where the use of it resulted in a thin other skin surface and problems with healing bruces and cuts.
I guess he would not recommend immune suppression medicine! But that seems to be used in Denmark!
Not that I know if any positive results of its use.
Houston, Texas
Is there anyone that has tested how IBM patients react to MSM (Methylsulfonylmethane) supplementation?
Is there anyone that has tested how IBM patients react to Taurine supplementation?
Hi from Denmark!
Today I was diagnosed with I IB M. . I was loosing my mind looking for Answers I am a retired nurse too.
Thank you so much for creating this video. It is extremely helpful on so many levels.
Glad you found it helpful!
I value your input and insight!
You’re welcome 🤗. Thank you and I really appreciate your comment.
I agree!!! The Myositis association helped me navigate through critical decision making processes by providing valuable information. ❤👍🏽👏🏽
If a veteran has been rated for SMC L, will they still qualify for caregivers?
I believe the myositis is being cause by the shots given in basic training
I got myositis while serving in the army at the age of 20 I’m 25 now and my strength has never came back.
I was diagnosed in 1996 and I had surgery in June of the same year.
I'm 43, went to the doctor because of joint pain and weakness, went through about a year of tests after tests and waiting to be seen by specialists. I was recently this year diagnosed with Myositis Antisynthetase Syndrome. I just always thought muscle weakness and joint pain came with age so I sucked it up for a long time. Jist starting my journey and treatment. Good luck to everyone else!
I'm sorry you had to go so long before getting a definitive diagnosis. I just had my 3rd positive ANA and RNP...including now a positive biomarker for Inclusion Body Myositis. Docs have been awful and extremely dismissive to me for years as I have watch my muscles weaken and atrophy. Still without a definitive diagnosis. I did finally find a PCP who is caring, listens and give me feedback. I am seeing him again next week and hoping to get some referrals to Neurologist and Rheumatologist to get some answers and a diagnosis so I know how to proceed. The muscle weakness and exhaustion is absolutely horrible. I wish you the very best!
Thank you! Will Dermatomyositis be covered?
This information was very helpful to me. Thank you.
Thanks, I have just about everything you mentioned
My liver specialist sent orders for routine blood work and for some reason the facility added a myositis panel to be taken by accident. Well...that showed my NPX-2 was high. He told me to see a rheumatologist and now knowing about the rashes and inflammation it all made sense. I am glad I was diagnosed by chance so I can tackle this while I am stable.
He’s really good at answering questions. Very helpful.
Thx
Any trials for indian patients!!
Epstein Barr or Lyme and co.=myosotis... unfortunately I disccover on my one case...
Epstein Barr or Lyme and co.=myosotis... unfortunately I disccover on my one case...
Ty for your service.. been dxd with DM for about 16 years..
Are There any myositis chapters In Northern Ohio
You are so awesome Ronda
I believe my mother's side of my family all had it due to symptoms that lead to there passing and all my health issues from a child up to my age now 40 and my mother was the sickest and just gave birth to me with full blown dermatomyositis
This discussion aptly points out that Dermatomyositis symptoms can be quite varied and not textbook. It makes this disease challenging to cope with and probably frustrating for doctors too who want to read the books and adhere to what they say. However treating the disease should result in improvement in these off-label symptoms. Also, poignant remark, "the labs are always fine" is also an insightful comment.
I am diagnosed with sIBM Do I have chance to participate in any trial going on Where do I contact
Thank you for sharing your history and what you went through to get to the dx. I have hEDS and am currently being evaluated for Myositis I also have Sjogrens Syndrome. Just being told that there is something else going on that can be treated versus just being told there is no treatment or being turned away because the doctor is not familiar can be so disheartening. Thank you for sharinng your story Dale.
I’m hoping that Mindy’s helpful tips encourage more IBMers to attend the TMA Annual Patients Conference.
Thank goodness I found this group.
I am so happy that you made it and got your wheel chair back. I too had to use a wheelchair to fly down to Louisiana to see my brother cuz I could not walk
Watching the Encore from NC