Volunteer

Wondering how you can get more involved to help and support the MG Community? We have so many opportunities for you to dive right in! MGFA offers many fun ways to volunteer and get involved to support us in our quest for A World Without MG. 

Volunteers are the heart and hands of the Myasthenia Gravis Foundation of America. We are currently seeking uniquely qualified volunteers, who are empowered by their experience with MG and can join us in raising awareness, supporting educational programming, and reaching local MG communities across the country. We seek volunteers with a wide array of expertise, from social media to healthcare to fundraising.

Volunteer Today

Become an MG Friend

If you are a person living with MG or a caregiver of someone with an MG diagnosis and can provide practical advice, an understanding ear, and emotional support, consider becoming an MG Friend! Our MG Friends volunteers are people of different ages and experiences with both life and with MG. Volunteers have at least two years of experience living with MG (either as a person diagnosed with the disease or a family member) and demonstrate empathy and a sincere desire to help others.

Through phone and email communication, an MG Friend provides confidential conversations, active and reflective listening, techniques to overcome day-to-day challenges, local resources, and information and answers to FAQs.

To become an MG Friend:

  • COMPLETE THIS INQUIRY FORM. You will be scheduled for a 30-minute interview to determine if this program is a good fit for your skills and interests.
  • You must meet the requirements and satisfactorily complete the MG Friend two-hour online training course. 

Learn more about MG Friends HERE. 

 

Support Group Leaders and Co-Leaders

Are you interested in forming an in-person or virtual Support Group in the MG Community? The MGFA has resources and training to help you get started! Our leaders and co-leaders are trained volunteers who organize and give structure to meetings that take place with those living with MG and their families. Leaders establish and run Support Groups by coordinating meeting spaces, guest speakers and local promotion. Leaders receive facilitator training, to ensure members feel welcomed, the atmosphere is friendly and that everyone has an opportunity to speak.

Don’t have a Support Group in your area? Our Support Group Calendar is home to existing and forming groups across the country. Don’t see your city or state listed? Consider forming a group. You will receive a Support Group Leader’s Manual, training and support from the MGFA in getting your group off the ground and keeping it going. You can contact Kathi Timothy at KTimothy@myasthenia.org or submit an interest form to volunteer today!

 

MG Patient Advocacy: Making Our Combined Voices Heard

The MG Community faces challenges that impact how we live our lives with myasthenia. In order to overcome those challenges, we must come together and make sure our voices are heard clearly at all levels of government, across the medical and insurance communities, and around the world.

Our MG Voice is the MGFA’s ongoing MG patient advocacy program that puts the future of our community in your hands. The call to action? We ask you to step up and engage in activity that could make a huge difference in people’s lives. We do so much to help drive action and results that can help our community including writing to Congress to ensure patient rights, submitting proclamations, creating advocacy alerts to influence stakeholders, and driving MG Awareness around the world. LEARN MORE ABOUT OUR MG VOICE advocacy program HERE. Or to become part of this national advocacy team, Complete this Volunteer Form.

The MGFA Ambassador Program

MGFA Ambassadors are passionate members of the MG Community who have demonstrated their commitment to the MGFA mission and their desire to grow with the organization to create the greatest impact in the lives of those touched by myasthenia gravis. Ambassadors are champions of the MGFA mission and have been called to share not only their personal journeys with MG but also offer their critical insight to raise awareness, expand education, inform advocacy work, increase support, and promote the value of clinical research. Ambassadors typically have experience volunteering with MGFA and are ready to move their investment to the next level.

MGFA Volunteer Ambassadors

Ambassador: Greg Josephs

Ambassador Area: Legislation and Advocacy

Bio: I am Greg Josephs. I’ve been living with MG for 21 years, with hundreds of stories to share. After growing up in the great state of New Jersey, I earned two degrees from Syracuse University in Mass Communications; since that was in the early 80’s, and communication has changed enormously since then, I’ve asked for a refund, but to no avail. I’m married to another SU grad, Maria, and I have three grown, marvelous kids and a very lazy beagle. In in 2010, I was declared legally disabled. Since then, I spend my days with self-care (moderate exercise, meditation, eating right), gardening (mostly vegetables) and fishing. Napping, too. The “silver lining” with MG is my personal perspective has changed such that the smallest detail is important… as my daughter said recently in a card, I am Older than Dirt, But Thank Heaven I Am Above It. I’m an MGFA Ambassador because I care about the vision of “A World Without Myasthenia Gravis.”


Ambassador: Priscilla Forrester

Ambassador Area: Community Health Fairs

Bio: Priscilla Forrester is of Caribbean descent, raised in Brooklyn, and currently resides in Northern Virginia. She attended Howard University, which originally brought her to the Washington, D.C. area. She is an accountant and has served in financial management for over 13 years. She is an avid volunteer and has worked with many organizations over the years. Diagnosed with MG in 2020, after suffering with symptoms in silence for several years, she has made it her mission to build community and engage her network with MG awareness. She led a team for the 2021 and 2022 Coast-to-Coast MG Walks, hosted an independent fundraiser in 2023, and organized mini local walks with family and friends to help spread awareness. Over  the past three years she has been volunteering with the MGFA, serving as volunteer lead organizer for our MGFA Community Health Fair events in the New York Tri-state and the Washington DC, Maryland & Virginia (DMV) area. She hopes to continue to be an advocate for those who live with MG, spreading awareness to support the continued development of diagnosis options, treatments, and a cure for MG.


Ambassador: Tom Bartlett

Ambassador Area: Registry

Bio: I’m Thomas Bartlett from Groveland, Massachusetts (Lifelong Red Sox Fan). I was diagnosed with gMG AChR + during the summer of 2019. I suspect I’ve been living with, and impacted by, MG since 2012. Before being diagnosed, I spent my career in techology, working for most recently for Harvard, Apple, Dell, an educational platform company for distance learning, and, most recently, a life science consulting firm. Today, I spend my time consulting for companies to understand how technology and science can impact outcomes for patients in real-time wearable devices, mobile devices, applications, AI/ML, and data analysis to improve and change the quality of a patient’s life after they begin targeted therapies. Driving toward a world with a true precision medicine for patients with disease such as myasthenia gravis. Personally – I have two children, both pursuing their careers in the chosen fields. One of my proudest moments in life was walking my daughter down the aisle a couple of years ago! Prior to being diagnosed I was an avid tennis player, golfer, and still played baseball, traveling to tournaments around the U.S. My hope for the future of MG is to improve the use of data, ensuring in Lifetime Quality rather quality of life.


Ambassador: Jenny Clark

Ambassador Area: MG Awareness / Peer Support Networks

Bio: I am Jenny Clark. I am originally from Indiana and now live in Florida. I have two kids and five grandkids.  I worked until 2016 in retail management. I have multiple family members with MG. I have known I had MG since I was a kid and was diagnosed with seronegative MG in 1990 at 22. I had a thymectomy in 2009 and 7+ years of glorious remission. My hope for the future has always been a cure!


Ambassador: Betty Ajueyitsi

Ambassador Area: Education / Virtual Learning

Bio: I am Betty Ajueyitsi. I am Nigerian American and live in Maryland. I was diagnosed with seronegative myasthenia gravis in 2011 and became an advocate after my journey through the medical system. Professionally, I have been a school teacher for over 25 years. My immediate family – husband and kids – are awesome. Knowing that they are in my life gives me the extraordinary inner peace that makes me feel that there is nothing that will stop me from my life goals. I just need to figure out how to get things done with MG – my invisible disability. 


Ambassador: Hannah Ensor

Ambassador Area: Education / Virtual Learning

Bio: My name is Hannah Ensor, and I live in Orlando, FL. I was diagnosed with generalized ACHR-positive myasthenia gravis in March 2022, after a nine-month-long fight for answers. I’ve been married to my husband for over ten years, and we have a daughter together. I also work full time as an engineer and currently volunteer with the MGFA as the co-lead for the young adults support group (MAYA). I volunteer because I don’t want anyone with MG to suffer without a diagnosis or treatment options. I see a future for MG that is bright: a future with better treatment options and fewer barriers to treatment, followed by an eventual cure for MG. 


Ambassador: Matt Bornstein

Ambassador Area: Fundraising

Bio: I’m Matt Bornstein. I was raised in Long Island and now live in New York City. I’ve been living with myasthenia gravis since I was diagnosed in 2011. I work fulltime in sales at a commercial lighting company. In my spare time, I like spending time with my wife, going to the gym, meeting up with friends, watching movies, and walking around Manhattan. Since 2022, I’ve enjoyed volunteering as an MG friend to help be a resource to newly diagnosed patients. I am also chairing the MG Walk in New York. Volunteering at MGFA is important to me because it allows me to use what I’ve learned first-hand about this rare disease to help others. Our understanding about myasthenia gravis has changed dramatically since I was first diagnosed with the help of research and new therapies. My hope is that we can continue to use the tools fundraising grants us to fund research that leads to new diagnosis and treatment options.

For more information about this program, email us at mgfa@myasthenia.org