Recognizing Our MG United Contributors 

Our MG United contributors are important members of the myasthenia gravis community.

MG United contributors are either living with myasthenia gravis (MG), a supporter or caregiver of someone living with MG, or an expert in their field, such as a healthcare provider. They play an essential role—from providing tips and recipes to sharing their experiences and expertise with members of the MG community. Their insights may help provide the opportunity for MG community members to learn from people like themselves—as well as experts in their field, such as doctors and nurses.

Get to know these MG United contributors and how they’re committed to helping empower the MG community.

Every person living with MG has a story that may help others in similar situations. We’d like to hear yours.

MG Healthcare Contributors:

Dr. Ciafaloni is a Robert C. and Rosalyne H. Griggs Professor in Experimental Therapeutics of Neurologic Disease and a Professor of Neurology, Pediatrics, Obstetrics and Gynecology at the University of Rochester, NY. She has devoted her career to the diagnosis and treatment of adult and pediatric patients with neuromuscular diseases, particularly muscular dystrophies, spinal muscular atrophy and myasthenia gravis.

Emma Ciafaloni
MD, FAAN – University of Rochester

Dr. Suresh attended UVA for her undergraduate degree in neuroscience and Eastern Virginia Medical School in Norfolk for medical school. She completed her neurology residency and neurophysiology fellowship training at the University of South Florida. She is an Assistant Professor, Department of Neurology and the Associate Director, EMG Laboratory at USF. She works as a clinical instructor, practices neuromuscular medicine and is involved in clinical research in a variety of diseases, including myasthenia gravis.

Niraja Suresh
MD – University of South Florida

Dr. Bhavaraju-Sanka is an Associate Professor of Neurology and the Director of the UT Medicine Neurology Clinic at the University of Texas Health Science Center at San Antonio, where she teaches medical students, residents and fellows. The clinic is active in clinical research with multiple trials in neuromuscular disorders like myasthenia gravis, Duchenne muscular dystrophy and immune neuropathies.

Ratna Bhavaraju-Sanka
MD – UT Health San Antonio

MG Community Contributors:

Alesheia is the founder of an empowerment network for people navigating chronic neurological and autoimmune diseases. She wants to fill the gaps in education between healthcare providers and patients, believing that the biggest needs for the MG community are clinician education and patient self-empowerment. She helps patients find their unique path for living their best lives, despite their diagnosis.

Alesheia*
Supporter and advocate for those living with complex chronic disease

Alexis is a call center manager living in Georgia who was diagnosed with myasthenia gravis when he was 24 years old. He was originally diagnosed with ocular MG and then diagnosed with generalized MG five to six years later. He focuses on self-advocacy and education and is a volunteer lead of the MG support group of Atlanta, GA. He continues his education by researching medical literature.

Alexis*
Customer support manager

Alicia experienced a droopy eyelid and two years later was diagnosed with myasthenia gravis at the age of 36. Her family, especially her mom, and friends have been her support system. She recommends joining a support community like a Facebook group if you are not a part of one, as she believes they can be so helpful.

Alicia*
Singer-songwriter

Bryan was diagnosed with MG in 2017. He lives with his partner and their Chihuahuas. Bryan started a support group for the MG community, especially for those aged 50 and younger. His goal is to try to be positive by loving and forgiving more often and teaching others to advocate for themselves. In his spare time, Bryan likes to sew dragons and blankets.

Bryan*
MG community advocate

At age 22, Caitlin was diagnosed with myasthenia gravis in 2020, just as the United States was shutting down to curb the spread of the coronavirus. She had a thymectomy in August 2020 and had to manage her diagnosis while finishing nursing school. She has now graduated and is working as a nurse.

Caitlin*
Nurse

Diagnosed with MG at age 22, Courtney realized she needed to adjust and find new ways to celebrate life. Since her diagnosis, she’s experienced double vision and slurred speech, and sometimes feels that her body is exhausted, so she actively tracks her symptoms to try to pinpoint possible triggers. Courtney is embracing her limitations while creating a life she wants and practicing self-love.

Courtney*
Reiki master

Dawn was diagnosed with anti-AChR antibody positive myasthenia gravis when she was 34 years old. She is passionate about many causes, including racial and LGBTQIA+ equity and activism. She attends conferences and classes and reads journal articles to stay abreast of what’s going on with MG research. She enjoys travel and photography. She is the founder of the Myasthenia Gravis Holistic Society, INC.

Dawn*
Holistic healthcare manager and entrepreneur

Diane’s wife, Kathy, was diagnosed at age 65 while they were caring for their 9-year-old daughter. One way they’ve been able to grow their marriage and communication is through what they call a 'kind confession.' It’s where they give one another permission to voice difficult feelings to each other, as long as they do it in a compassionate way.

Diane*
Psychologist and caregiver to Kathy

Iris’s husband, Victor, was diagnosed at age 73 during their retirement. He is now in remission, and they run a support group. Iris says they're lucky that the only remaining symptom Victor has is fatigue. She hopes people see Victor in remission and think it’s achievable. It’s not easy but may be possible.

Iris*
Retired and caregiver to Victor

One evening when he was playing tennis, John noticed his game was off. At the time he was 50 years old and thought it was just his age catching up with him. After visiting with many physicians, John was diagnosed with MG. He began to feel his role as a caregiver and father change, as his wife and daughters were now caring for him. John says that “when the game gets tough,” he reminds himself that he’s still a champion because he hasn’t given up.

John*
Coach and school administrator

Julia was diagnosed with myasthenia gravis at the age of 21 while attaining her Bachelor of Science. She went on to become a Doctor of Occupational Therapy and now specializes in hand therapy. She is the creator and administrator for the Washington State MG support group on Facebook. She’s made many friends in the MG community and also finds support from her fiancé and family.

Julia*
Occupational therapist and certified hand therapist (OTR/L, CHT, OTD)

Kait was diagnosed with myasthenia gravis when she was 11 years old. She sees the value in having a mentor and runs a Facebook community for chronically ill small business owners and freelancers. Her mom and husband are her strongest supporters. She is also a watercolor painter.

Kait*
Community management developer; painter

Kathi first started experiencing MG symptoms in 2010 and was diagnosed shortly after earning her master’s degree in 2018. A month after her diagnosis, Kathi decided to retire from her successful career, leading to some feelings of depression. After a while, she made the proactive decision to seek help and has found that her relationships with family and friends mean more to her than a career ever could. Now, she’s grateful for the extra time she gets to spend with her family, especially her grandson.

Kathi*
Retired director of patient access

When Kathy was diagnosed with myasthenia gravis at the age of 65, she was hospitalized for two months and had to stop working. However, her daughter helped her realize that she had to set new priorities and find new purposes to make her life fulfilling. She's happy at home with a book, a few hobbies and being surrounded by her family.

Kathy*
Retired nurse

Leah was a manager of a clothing store and a beekeeper who gave talks about honeybees and beekeeping in her home state of California before going on permanent disability after she was diagnosed with MuSK+ myasthenia gravis when she was 39 years old. She’s the leader of the International Spanish MG Support Group and reads online articles to keep updated about the disease.

Leah*
Group leader of Spanish MG support group

Meridith is the St. Louis Program coordinator for the Myasthenia Gravis Association (MGA) and also owns her own patient advocacy consulting company, The Merit Option. She was diagnosed with MG at the age of 13. Meridith advocates for patients by writing about her diagnosis, working with MG community members and collaborating on healthcare initiatives to educate, engage and empower others.

Meridith*
Patient advocacy & MG Association

Rachel enjoys spending time with her friends and family. She’s a homemaker from Texas, and she was diagnosed with myasthenia gravis at the age of 33. When not keeping up with her active daughter, Rachel is participating in awareness events or taking part in rare disease support group efforts, including some for MG. Her husband, family, friends and healthcare team also provide her with plenty of support.

Rachel*
Homemaker

Stephanie was diagnosed with myasthenia gravis at the age of 22. Her dad was diagnosed a few years before her when he was 41. She now runs an autoimmune support group online, and she’s active on Instagram and Facebook. She has experience with public speaking, formerly teaching classes of 30+ students, and she is now in financial services for a tech company.

Stephanie*
Financial service for tech company and former university teacher

Tommy is an avid sports fan and community activist who uses his writing and social media skills to spread the word about myasthenia gravis. He was diagnosed with myasthenia gravis when he was 12 years old, and now he’s a marketing director. He continues to learn about MG through the course of everyday life.

Tommy*
Marketing director

Vanetta was the captain of her high school step team before being diagnosed with myasthenia gravis at the age of 16. She got into fitness after her diagnosis as a way to combat her MG symptoms. Vanetta’s close-knit extended family has given her the support she’s needed to pursue her unique career as a personal trainer to people with chronic illnesses.

Vanetta*
Personal trainer

Victor was diagnosed with myasthenia gravis when he was 73, but he’s currently in remission. He leads his own support group through the Conquer MG Foundation, where families and caregivers meet to help each other. A main goal of his support group is to keep his community up to date on the latest medical information on MG, including clinical trials and insights on research developments.

Victor*
Fiction writer and former computer programmer

Whitney is a supporter of her father, John, and a winner of MasterChef. After John’s MG diagnosis, she began adjusting her recipes to be more health conscious, since some people may undergo weight gain while managing MG. And because John sometimes had trouble swallowing, she experimented with cooking methods that made the foods she cooked softer and eliminated salt. Whitney was also able to teach her father some tips in the kitchen to help him save time and energy.

Whitney*
Chef and supporter of John

Zach loves art and uses his passion for it as a therapeutic medium. He used to work as a graphic designer and was diagnosed with myasthenia gravis at the age of 48. He continues his MG education by researching medical journals and connecting with others with MG.

Zach*
Leader of MG support group

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