MG Pulse Check
Make your voice heard
Participate in the iMaGineMyMG polls to share your unique experience and contribute to a better understanding of myasthenia gravis.
Be sure to check back monthly for the latest poll. Join the community to be alerted when new polls are available.
Participate in Progress
A lot of work is being done by universities and companies to develop new treatments for MG. You can participate in the progress being made. A listing of trials currently recruiting people living with MG can be found at ClinicalTrials.gov and on the Janssen Global Trial Finder site.
Clinical studies are used to learn what does and doesn't work for the management of MG, to better understand the life of people living with MG, and the circumstances surrounding a crisis. There is always more to learn and better understand.
What does it really mean to participate in progress?
We answer some of the most common questions below. EXPAND ALL
One way to join a clinical trial is to be invited. If a doctor thinks you may meet the criteria to participate in the study, then they may tell you about the trial to see if you want to learn more about the trial and what is involved with participating.
However, you do not need to wait to be invited! If you learn about a clinical trial that is of interest to you, the first step would be to discuss it with your regular neurologist, who knows you the best. Your doctor can find out if you are eligible to join the trial. If you are, then your doctor should be able to get you in touch with the people who are running the trial.
You can also contact the company who is responsible for a trial (study sponsor) that you are interested in learning more about. The company can help get you in touch with a clinical trial location nearest to you to discuss more details.
Here are some questions you may want to ask.
- What is required for me to participate?
- What are the risks and benefits?
- Are there any costs to me? If I must travel, who will cover the expenses?
- What is already known about the investigational medication being studied? Has it been given to anyone before?
Any potential known or unknown risks will be discussed with you at the very beginning of the process. This step is called Informed Consent. The informed consent process is a discussion intended to ensure the researchers (clinical trial staff) share all that they know about the clinical trial including its risks, and allow you to ask questions. If you are not satisfied with the answers to your questions, are not comfortable with any risks you learn about, or if there is too much uncertainty, then you can choose not to participate. It's always up to you.
You may experience certain benefits from participating in clinical research, depending on the type of study. Benefits may include the following:
- Help others who have MG now and in the future by participating in the study of new medicines
- Experience more frequent interactions with healthcare providers who are experts in MG
The specific benefits you may experience will be unique to the trial you join and can be discussed with the clinical trial team running the study.
Typically, you would not be responsible for the costs to be in a trial. The medical care that is needed as part of the trial is covered for you. You may be reimbursed for travel or other expenses related to participating in the trial. These details will be discussed during the informed consent process with the clinical trial team.
Yes. Even after you consent (give your permission) to participate in a clinical trial, you are free to change your mind at any time. You should feel free to speak up if you no longer want to participate.
The iMaGineMyMG Community
It's been a tough road, but I feel that I'm learning to LIVE with MG! Every person's journey is unique, and we have some things in common and other things are very different. But I see across the board that we are fighters, and we are resilient!! I've learned to adapt to challenges that I thought were insurmountable. I hope that I can in some way help someone else to overcome the difficulties or challenges that they face.
With time and patience, you can live your best life.
I take time every day to do things that bring me joy.
My mom and I both have MG!
Celebrating the one-year anniversary of my thymectomy.
My symptoms were droopy eyelids and slurred speech.
Join the iMaGineMyMG community today to access helpful resources, keep track of your symptoms, and more!
You are not alone. The rare diseases and MG communities are here to support you. There are so many ways to share your story, spread the word, and engage with others.
You can lean on these groups for helpful resources and valuable connections.
Myasthenia Gravis Foundation of America (MGFA) is the largest, leading patient advocacy organization solely dedicated to finding a cure for the rare neuromuscular disease myasthenia gravis (MG) while improving the lives of people living with MG. The MGFA is focused on funding the most promising research and clinical studies to discover better treatments and a cure for MG while providing impactful programs, patient advocacy opportunities, guidance, and education to help support members of the MG Community. Access the Community and Resources page to learn how to connect with others with MG and raise awareness.
The Myasthenia Gravis Association is dedicated to supporting patients, families, friends, and communities impacted by Myasthenia Gravis with in-person outreach and programs for the Arkansas, Missouri and Kansas areas.
Access their Programs and Services peer-to-peer programs, onsite clinics and community events.
Muscular Dystrophy Association is focused on combating muscular dystrophy and diseases of the nervous system (Myasthenia Gravis) by funding research, providing medical and community services, and educating health professionals and the general public.
They are a great source of information on MG, as well as a platform to connect with others living with MG and tools and tactics to become your own advocate. Learn more about their work in MG and their upcoming MG family and patient symposium.
Conquer Myasthenia Gravis is driven by the desire to help MG patients get prompt diagnosis and optimal care. Focused on improving MG patient lives through programs of patient services, public awareness, medical research funding, professional education, advocacy, and patient care.
Learn about their program and services and ways to get involved.
The EveryLife Foundation for Rare Diseases is a nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures. The Foundation provides the training, education, resources and opportunities for rare disease patients, caregivers and others impacted by rare disease to make their voices heard. Since its founding in 2009, the Foundation has engaged thousands of rare disease advocates through its programs and events, resulting in the successful passage of key policies and legislation with bipartisan support.
Global Genes is a 501(c)(3) nonprofit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. In pursuit of our mission, we connect, empower, and inspire the rare disease community to stand up, stand out, and become more effective on their own behalf — helping to spur innovation, meet essential needs, build capacity and knowledge, and drive progress within and across rare diseases. We serve the more than 400 million people around the globe and nearly one in 10 Americans affected by rare diseases. If you or someone you love has a rare disease or are searching for a diagnosis, contact Global Genes at 949-248-RARE or visit our Resource Hub.
The National Organization for Rare Disorders (NORD) is committed to the identification, treatment and cure of rare diseases through education, advocacy, research and patient services. Having served the rare disease community for nearly 40 years, NORD has many resources to help you live your best rare life. Learn more about MG from NORD’s Rare Disease Database and connect with others through their conferences, social platforms, programs and events. Visit rarediseases.org for more information.