Myasthenia Gravis Hope Foundation

Call Directions Website Contact the organization

Myasthenia Gravis Hope Foundation At MG Hope, we believe in standing in the gap with our patients and caregivers through advocacy, education, emotional support and cultural awareness.

Join the MG Hope Foundation as we offer hope through a no fee patient advocacy, education, advanced lay and clinical resources, community support, cultural awareness projects and more. For international support, education and community, please visit our sister site at www.facebook.com/mgunmasked

Exploring a Clinical Research Opportunity for Generalized Myasthenia GravisMG Hope has proudly partnered with LeapCure t...
08/28/2026

Exploring a Clinical Research Opportunity for Generalized Myasthenia Gravis

MG Hope has proudly partnered with LeapCure to bring you an incredible research opportunity for those with AChR and MuSK who have struggled to control their MG symptoms even with advancing treatments.

People living with generalized myasthenia gravis (MG) know that symptoms such as muscle weakness can continue to affect daily life, even after trying available treatments.

Researchers are currently conducting the KYSA-6 clinical study, which is evaluating an investigational CAR T-cell therapy, called Miv-cel, for adults living with generalized MG that remain active despite prior treatment.

Some key study details include:

• Adults ages 18–75 may be eligible

• Participants must have generalized myasthenia gravis with AChR or MuSK antibodies

• There is no placebo arm in this study. The investigational CAR T-cell therapy will be compared with the current standard-of-care treatment. Participants in the standard-of-care treatment arm will have the option to receive the investigational therapy following the initial portion of the study.

• Travel and caregiver support may be available for eligible participants

The Leapcure team is supporting this study by helping individuals determine whether they may be eligible and by offering 1-on-1 support throughout the process.

If you'd like to learn more, start by completing this short questionnaire:
https://lpcur.com/mghopefoundation

Rare Patient Voice, in partnership with MG Hope, presents:Paid Study for those in France, Germany and Italy!! 🇫🇷 🇩🇪 🇮🇹 R...
08/18/2026

Rare Patient Voice, in partnership with MG Hope, presents:

Paid Study for those in France, Germany and Italy!! 🇫🇷 🇩🇪 🇮🇹

Rare Patient Voice is inviting patients living with Myasthenia Gravis in France, Germany, or Italy are invited to a paid 30-40 Minute Online Survey that pays €50 for your time!

Sign up below ⬇️

Let’s Get Started Are you a patient or family caregiver with something to say? Make your voice heard by participating in paid surveys, interviews and online communities! Start talking to the right people. It's free! We accept rare and non-rare diagnoses! In celebration of our 10th Anniversary our ...

Special Attention to Parents and Adolescent Myasthenics:There is a unique research opportunity for your adolescent Myast...
08/13/2026

Special Attention to Parents and Adolescent Myasthenics:

There is a unique research opportunity for your adolescent Myasthenic and parent in this new paid study!

➡️➡️➡️ IF you do not see a city near you listed, please message me as the research team may be able to make some exceptions. ⬅️⬅️⬅️

Once again, MG Hope has the pleasure of working with LaGrippe Research and help bring you a rare opportunity for a part of our community that is often ignored. ❤️

LaGrippe Research, a market research firm specializing in healthcare, is working on a project on the topic of injection medication and are inviting adolescents (aged 12-17), with their parent's approval, who have been diagnosed with Myasthenia Gravis, that utilizes injection medication(s) to participate.

This research will be in the form of a 75-minute, in-person discussion. We will provide the parent or legal guardian with an incentive of $360. We will be conducting these interviews from August 24th – October 30th in different cities around the United States (Chicago, IL; Dallas, TX; Atlanta, GA; Baltimore/DC area; New York City, NY; and Detroit, MI).

The research will involve adolescents answering some questions about themselves as well as learning about new devices that would be used to deliver medication. The devices we will show them will contain real needles; however, they will be asked to simulate injecting the devices into a pad instead of themselves or anyone else. They will NOT be exposed to any drugs nor receive any medical treatment as part of this study. Finally, we will conclude the session with some follow up questions about the overall experience and remaining feedback.

If you are interested, please fill out our preliminary questions online here:

If you are interested, sign up here!

MG Hope has an exciting announcement! Please help us give a warm welcome to our new Director of Nursing and Patient Educ...
08/03/2026

MG Hope has an exciting announcement!
Please help us give a warm welcome to our new Director of Nursing and Patient Education, Tsungani.

As a nurse and MG patient, she brings a special appreciation for the needs of this community and the teams that help take care of each person.

You can learn more about Tsungani’s skill and passion for MG below and we look forward to continuing to serve you as we grow!

https://mghope.org/our-leadership-1

Attention to all MG warriors in France, Germany and Italy! MG Hope has partnered with Rare Patient Voice to bring you a ...
07/14/2026

Attention to all MG warriors in France, Germany and Italy!

MG Hope has partnered with Rare Patient Voice to bring you a paid research opportunity for you to participate in! Participation is 30-40 minutes in an online study survey and the payout is 50 euros for your time!

Spots are limited so be sure and grab your chance asap. 💕

Be warned that VPN’s will be rejected and are being carefully screened.

To sign up:

Let’s Get Started Are you a patient or family caregiver with something to say? Make your voice heard by participating in paid surveys, interviews and online communities! Start talking to the right people. It's free! We accept rare and non-rare diagnoses! In celebration of our 10th Anniversary our ...

06/30/2026

Cognitive Dysfunction with Myasthenia Gravis

“Patients with MG frequently experience memory difficulties (60 %) and impaired performance on tests of response fluency, information processing, and verbal and visual learning—issues that show up even when mood is normal, the disease has been stable for years, or they’re on a steady low dose of immunosuppressive drugs. EEG abnormalities and abnormal evoked-potential responses appear in about 80 % of patients with MG. Some studies show real benefit from treatments like plasmapheresis, yet others report no change in cognitive function after the muscle symptoms improve.”

The quick stats:

• Prevalence: 30–60 % (please note that this is still heavily debated with some studies leaning even a little higher than the 60%. Outcomes depend on the tests used and the individuals tested)

• Severity: Usually mild to moderate as an academic assessment but patient self assessments often score between mild to severe with many influencing factors such as overall disease control, fatigue, stress etc…

• Domains most affected: Memory, attention, and executive function (by far the most consistent findings across studies) BUT it is not always limited to these findings as we will explore below.

Generalized fatigue, depression, anxiety, certain medications (especially high-dose steroids), natural aging, co-morbidities and sleep problems can be cofactors and influence some cognitive processes but it certainly does not explain the underlying mechanism or symptoms.

Some researchers believe that there is a central cholinergic dysfunction via anti-AChR antibodies may be interfering with acetylcholine receptors in the brain, though that idea is still being heavily debated as this does not explain the same phenomenon happening in MuSK and SNMG patients.

What the cognitive impairment actually feels like is largely subjective but the general consensus is that the deficits are fatiguable—your thinking/processing speed and accuracy drop faster the longer or the more you do the task, exactly like the muscle fatigue felt in our bodies.

You may also struggle with:

• Memory: trouble forming new memories, slower verbal learning, delayed recall, and forgetting things you just discussed in a conversation. Lists, frequent verbal or written reminders are often needed. Short term memory is usually what is most impacted in MG.

• Attention & processing speed: poor sustained attention, slower thinking, and that classic “brain fog.” Even simple tasks can feel overwhelming.

• Executive function: planning and organization slips, trouble switching between tasks, feeling overwhelmed with what to do next etc…

• Visuospatial / language: sometimes present as mild spatial issues (getting lost in familiar places or struggling with puzzles) and trouble with word recall.

For many years, this was considered to not be part of MG presentation. Many doctors (even MG specialists) were trained to dismiss this or chalk it up to poor sleep habits. But the truth is being affirmed as patients continue to speak up and research is slowly affirming this. While there is no direct treatment, looking at the whole picture can be very helpful. Do not hesitate to connect with your doctor and share this information with them and ask for a plan to move forward.

Author: Rebekah Dorr
MG Hope Foundation

Clinical references:

• Tucker DM, Roeltgen DP, Wann PD, Wertheimer RI. Memory dysfunction in myasthenia gravis: Evidence for central cholinergic effects. Neurology. 1988;38(3):1173–1177. (Classic Boston Naming Test and Wechsler Memory Scale study showing clear cholinergic effects.)

• Riker WF. Memory impairment in myasthenia gravis. Neurology. 1989;39(4):611–612.

• Davidov-Lustig M, Klinghoffer (Strich) V, Kaplan-Dinur A, Steiner I. Memory abnormalities in myasthenia gravis: Possible fatigue of central nervous system cholinergic circuits. Autoimmunity. 1992;14(1):85–86.

• Kazis A, Pappa A, Xafenias D. EEG findings in myasthenia gravis. Electromyogr Clin Neurophysiol. 1984;24(7):577–582.

• Paul RH, Cohen RA, Gilchrist JM, et al. Cognitive dysfunction in individuals with myasthenia gravis. J Neurol Sci. 2000;179(1-2):59–64. (Significant impairments in response fluency, information processing, verbal learning, and memory—moderate effect sizes compared with controls.)

• Paul RH, Cohen RA, Zawacki T, et al. What have we learned about cognition in myasthenia gravis? A review of methods and results. Neurosci Biobehav Rev. 2001;25(1):75–81.

• Marcassoli A, Trucco G, Mazzilli A, et al. Does myasthenia gravis impact cognitive functioning? A systematic review and meta-analysis. Neurol Sci. 2026;47(1):111. (Confirms selective problems in memory recall, processing speed, verbal fluency, and visuospatial skills.)

• Lupica A, et al. Frequency and Correlates of Mild Cognitive Impairment in Myasthenia Gravis. Brain Sci. 2023;13(2):170.

• Cognitive performance in patients with Myasthenia Gravis. Dement Neuropsychol. 2020;14(3): (worse memory and executive function, independent of disease duration or severity).

• Neuro-metabolic and brain functional alterations: Combined 1H-MRS and fMRI evidence of decline in global function, memory, and visuospatial domains (2024)

Thank you to the City of Orlando for partnering with MG Hope to light up Lake Eola for MG Awareness!
06/27/2026

Thank you to the City of Orlando for partnering with MG Hope to light up Lake Eola for MG Awareness!

Breaking news!Vyvgart and Hytrulo are now FDA approved for ALL patients with MG including MuSK, LRP4 and triple seronega...
05/09/2026

Breaking news!

Vyvgart and Hytrulo are now FDA approved for ALL patients with MG including MuSK, LRP4 and triple seronegative!

This is incredible news that so many have been waiting for! 🎉🥳👏🏻🙌🏻

VYVGART and VYVGART Hytrulo are the first and only approved treatments for all serotypes of adult patients living with gMG – anti-AChR-Ab positive,...

02/13/2026

MG Hope is excited to announce a new education series on the new and upcoming treatments launching next week so stay tuned!

02/12/2026

Spots are almost gone!
MG Hope is partnering to bring you a paid short study opportunity for AChR and MuSK gMG in the US.

Details about this study below ⬇️

“How does Myasthenia Gravis impact your daily life? We’re looking for community members who have Acetylcholine Receptor Positive (AChR+) or Muscle-Specific Kinase Positive (MuSK+) antibodies to participate in a 20–25 minute online survey to help improve gMG treatment and management.

To show our appreciation for your time, you’ll receive a compensation check in the mail shortly after the survey period ends.”

I want to sincerely thank you for lending your voice to projects like these. There is a lot of behind the scenes work to bring this all together and the desire is to better understand where quality of life is and where treatment is not addressing things appropriately. Something I think we can all agree needs to be better understood.

-Rebekah Dorr, BCPA
Director of Clinical Patient Advocacy

If you have any questions or concerns, please feel free to message us directly!

Address

Orlando, FL

Alerts

Be the first to know and let us send you an email when Myasthenia Gravis Hope Foundation posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Organization

Send a message to Myasthenia Gravis Hope Foundation:

Shortcuts

Sponsored

Share